Once upon a time, not so very long ago........

Little Leon was born with a poorly heart. This made his Mummy and Daddy sad and they decided to search for a special friend who would keep Little Leon company and look after him while he was in hospital.............

The Adventure begins..............

Wednesday, 24 October 2012

Little Leons Mummy paints his Heart..

Silver and Red hearts hands painted with love by Leons mummy!

Exclusive to his blog and Facebook today! Please tell Leon if you like his heart! £1 each, can be personalised too!

Coming soon on his website!

Sunday, 21 October 2012

Little Leon presents......... His Heart!

Woo!   Have you missed us ?

Little Leon and Mummy have been soooo busy, some things have been neglected, his blog being one of them......    Little Leon has told Mummy off for not letting you know how he is...

Leon has been having adventures and some fun with Mummy and Daddy, but he has also been a bit poorly.  There has been a chest infection bug type thing going around and for the last three weeks he has been a bit grumpy and coughed a lot, then he screams at the cat who runs off..... So its all fun and games in the house.

Sadly he has had to say goodby to Sara, Mummys very dear school friend.  Sara loved to craft and make lovely cards with her daughter and she tought her lovely boy how to cook before she had to go on her looooong sleepy.    Mummy feels very sad she cant ring and talk to her like she used to, but she is with us every day in our hearts........

So, you are probably wondering what about Leons Heart.............?    Well Leons Mummy has been working on some lovely heart themed crafts, she has decided to try and start it up as a craft and Occcupational Therapy business!  She has called it    'Leons Heart' !   Woo, how special is that....

Saturday the 27th October is Leons Hearts first craft fair at Ossett Town Hall.  10am to 1:30pm, So if you are in the area please pop in and say Hi, Little Leon will be making a personal apprearance.   Mummy says he cant cut the opening ribbon as he is not allowed scissors.....  But she has promised a celebration bun. 

Coming soon........

A list of Fairs in Yorkshire Little Leon has been invited to :D

Love Mummy and Little Leon xxx

Wednesday, 17 October 2012

Little Leon says....

Beep Beep!

Mummy has some exciting news! She says she will tell us later ....

Night all xx

Saturday, 29 September 2012

Little Leon says Happy Heart Day!

Pop over to Leon's Heart Facebook page and Like us for a chance to win a lovely Heart Bear!

Thursday, 23 August 2012

Little Leon meets Katie Bear and helps with Fundraising...

On Monday Little Leon noticed a post from the CHSF on Facebook asking for boys and girls to come and see Katie Bear, he said to Mummy, can we go tomorrow?   Well Little Leon really wanted to meet Katie and Mummy said if the weather was ok she would take him to Leeds in the Volvo chariot.
So Tuesday came, Mummy packed Leons bag with some snacks, milky, water and a change of clothes, (just in case he jumped into a watering can like he does at Grammas house!).  Off they set. 
When they arrived Mummy and Leon had a coffee, well Mummy did, Leon had woken her up early because he was excited and didnt go back to sleepy.  So a Costa it was.   Niomi arrived with her family and then Myraim, Matilde and Margeaux, Jacob and his Daddy arrived too. 

Katie Bear, Leon and his heart friends

So over to the Childrens Heart Surgery Fund office they went, Sharon said they wanted to do Fund raising Fridays so, Katie wanted some handsome photographs with her heart friends to promote her cause.   Leon and his buddies lined up with Katie and Angela took some lovely photographs, Mummy stood behind her and took a few snaps of her own.  
Can you see Katies cardboard cut out peeping at the back?
Woo Katie what soft fur you have!

Little Leon sneaked onto Katies knee, Katie gave Leon a lovely hug and he says woo, what soft fur you have, all the better for hugging with she said, what big paws you have, all the better for keeping you safe with. Wooo! Leon gave Katie bear a beeeg hug and then everyone else wanted to jump on her knee and give her hugs too.
Little Leon is wondering when he can get at the buns..
All too soon the fun was over, but Angela had a suprise for the heart buddies, she has brought some lovely buns for them to share to say Thankyou for coming, Katie had to go home too, it was porridge time for hungry bears and her Mummy would be waiting with a large bowl and a wooden spoon so she could eat it all up.
Shake shake shake........ put your Daddys change in here!
Leon popped into the office and helped Margeaux come inside too.  She is lovely and looked after Leon very well. so well that he didnt drop his bun!
So, after the excitement of the photo shoot..... Little Leon treated Mummy to a trip to Paperchase so she could get some supplies for her project.  Mummy settled Leon in his Volvo chariot for the trip home and he decided to have a bit of a sleepy and catch up on what he missed by getting up early.
All this attention has worn me out ZZZZzzzzz
So watch out for the paper on Friday 31st August, Little Leon, Katie and his heart friends are raising funds for the CHSF.

Friday, 17 August 2012

Little Leon has been busy having fun....

Little Leon has been busy having fun since he got better from having a rather nasty virus.  He was soooo generous, he passed it onto Daddy, who was also very poorly!

When Leon was soooo poorly in Leeds with his heart, there was a lovely nursey laydee who looked after him and Mummy and Daddy, a no nonsense, tell it like it is and comfort where its needed nursey laydee.  Steph has been nominated for a Best of Health award by her little charges and their Mummys and Daddys.  Leon says hes really pleased and is going in to give her a hug next time he visits..... he might have to hug the other nursey laydees too, he doesnt want them to feel left out........

On Thursday Little Leon was with Mummy playing in the garden, when Margaret his next door neighbour peeped over the wall and said she had a surprise for Leon......  Well, off she went to her cellar and came back with a new car for Leon....... Woo, its a little Coupe, originally it was her Granddaughters, then her Great Grandsons and she wants Little Leon to look after it and keep it on the road for a bit longer.

Woo, Mummy nearly cried and Leon was whooping with joy, in fact he couldnt wait for Mummy to give it a wash, he jumped straight in!  Bruuum, Bruuuum all around the garden.......

Wooooo Hoooooo! myown wheels!
So around and around the garden he went with Mummy pushing and trying to keep out of the way when he mastered the art of going backwards!  On the back is a little shelf that will fit Noel rather snugly, so when Leon goes crusing, Noel can join him for another adventure.....  Later, when Daddy got home from work he took Leon to the park, Leon says its because Daddy likes playing on the swings and spinney thingy......
It needs petrol? Really.. Daddy go get your wallet!
Laydees, I have my own wheels now....

Little Leon also visited Gramma today, she made a lovely lunch of spag bol and sausages, Leon ate lots of it.... nom, nom, nom......
Then he went out to play with his cousins, Jas and Cara, they ran round and round Grammas garden wearing Grandad out!  He said he was going to need a lay down once everyone had gone home!
Rocking with the laydees!

Sometimes when Daddy gets home from work he is a bit tired, so Leon sits him down on the settee and reads him a story, this is the story of Thomas the Tank engine...... Daddy likes Thomas stories.

if you press here it goes chooo choooo!

Mummy and Little Leon sending love to Sara :)

Friday, 10 August 2012

Little Leon is poorly again...

Poor Little Leon is poorly again... Being very sick and very hot again... Mummy's not keen on the phrase Hyperpyrexic it means bloody hot!

Leon is hoping its just another bit of the virus , or it's another one.....

That's the reality of having a kazoo with a run down immune system.. Mr germ is going to come knocking whenever he spots an opportunity!

Mr Calpol and Mr Ibruprofen to the rescue!!!!

So keep your fingers crossed folks, Little Leon wants to feel well again very soon!

Tuesday, 31 July 2012

Little Leon would like to declare Leons Heart Open!

Today Little Leons Mummy finally got around to opening an Etsy Shop! 

Leons Heart!

His Little trimmed heart bears are the first to go on sale, soon, (as soon as Mummy takes the pictures!)  The bracelets and key rings will appear. so please watch this space!

please have a look and tell us what you think, obviously there is a free hug from Leon with every bear!

Love Leon and Mummy xxx

Sunday, 29 July 2012

Little Leon frightens Mummy and Daddy!....

Well, what a long week it has been for Little Leon and his Mummy and Daddy, after his marching to keep the unit open on Monday, Leon started to feel poorly....... 

On Tuesday his temperature went up, and up, and up and........ When he was at 40degrees he decided he might have to drop in and say hello to the nursey laydees at the Accident and Emergency department because the Calpol and Ibruprofen were not doing the trick!  Mummy had rung the doctor, but had got the receptionist who suggested, (obviously after years of medical training) that a book on the day appointment the day after was more appropriate!  Mummy likes to cook her eggs in a pan and not on Leons tummy...... too much mess!  So after one of those conversations that ends up with Mummy hanging up in frustration, bypassing the Walk in Centre and going straight to A&E!  Off they set.

So Mummy telephoned Daddy at work and he said he would meet Leon at the hospital, he wanted to see the nursey laydees as well....

So at 4:30pm Mummy tucked Leon into his car seat, off they went.  The receptionist booked Little Leon in and said he did look like a little warm boy and sent him to sit in the Childrens A&E, he was very quiet and didnt even manage a smile when the Nurse invited him into her office.
Little Leon needing Daddy hugs

She knew all about Little Leon and his poorly heart, so she found him a lovely bed to sit on and then went off to find the doctor, meanwhile another nursey laydee  wanted to check Leons wee..... Daddy said Mummy could do that because last time, Leon wet Daddy...........  Well, the little bag went on, Leon wanted a Daddy hug, and wooo!  or should we say Weee!  Little Leon leaked into Daddys shirt pocket and wet his parking ticket....... poor Daddy!

So then he got some more Calpol, yummy..... not, Little Leon doesnt really like the taste.  The lady doctor was very kind and let Little Leon play with her stethascope while she was listening to his heart, she said he has a virus and she would let him go home.

Leons personal nurse looks after her little kazoo

So Little Leon went home again and spent the night still being warm, but the Nurse knitting Nana had made for Mummy when she qualified as an OT looked after him, (she knitted a nurse because she didnt have a pattern for an OT...)   Gramma called in on Wednesday to look after him for the afternoon while Mummy took Grandad out on a Steam train to York, he was looking and feeling lots better and had eaten some lunch.........

Leon and Ollie watching ceebeebies!
But he had other ideas in the night, he woke up for his 2am milky and Mummy noticed he was hot hot hot again! 40+ degrees again.... then he was sick in his cot..... poor Leon, but good for the cot bed gang as they were all crowding in the bottom of the bed, so up Daddy got..... gave some more Ibruprofen...... and waited an hour....... and when Little Leons temperature was going up and up and up, Daddy packed him and Mummy into the car and went to see the Nursey Laydees again.........

This time they took him straight in, it was the nursey laydee he had seen on Tueday afternoon! She was very happy to see Leon but said he should be tucked up in bed not visiting her in the middle of the night!  The charming Dr Singh came and gave Leon a good look over, its a stubborn virus he said and if it had been his little kazoo he would have done the same and brought him straight back.  So after a couple of hours, off back home he went, to sleepy he went, and off to work Daddy went and into a worrying heap Mummy went.........

Mmmm yogurt!

After a good long sleep he woke up and ate a whole Yoghurt, the creamy kind with the fruit in the bottom!

He spent Friday playing with Mummy and his toys feeling much better!

Woo Mummy hugs!

Saturday he even braved a trip to Trinity Walk as he was running out of Milky and Nappies....... Thats so not cool for a Little Kazoo to do that!

Tatty Teddy meets Little Leons Daddy!

Guess who he met!  It was Tatty Teddy, you may recall that Leon met Tatty at the Baby show in Manchester last October when he was bursting pink balloons!  They were very pleased to meet each other again and Little Leon introduced Daddy.

They also took Mummy for coffee and cake......

However, Sunday morning Little Leon woke Mummy and Daddy nice and early and wooo!  Was covered in a red rash...... Oh my, what were they to do....... Well they took Dr Singh's advice and took him straight back.......  The equally charming Dr Goghu, said it was a post viral rash and nothing to worry about.

So after three visits to the laydees and gentlemen of the Accident and Emergency department in Pinderfields Hospital, Little Leon, Mummy and Daddy would like to say a beeeeg THANKYOU for looking after him and Leon says, wink wink, he will see you all soon..........

Little Leon says if you have a temperature get Mummy or Daddy to get you checked out, its probably going to be a virus like his, but its best to check it out, plus you get more hugs than usual if you are feeling poorly........  :D

So Life after TOF repair marches on, but it is still a worry when you have a week like this where you think your little guy is going to hang up his dancing shoes for good......  but not this week.... were stilll dancing.........

Thursday, 26 July 2012

Little Leon goes a marching.....


As most of you will probably have heard by now..... if you havent which moon were you visiting....... The Childrens Cardiac surgical unit in Leeds was recomended for closure and the loads and loads of people who use it 'managed' in the direction of Newcastle for treatment.....

Little Leon and his friends, their families and his nursey laydees are very understanably upset by the whole process.......

Heart families meeting to protest
So on Monday the 23rd July they all gathered together to protest in Millenium Square in Leeds. They sang as they walked, conducted by Lyalls Grandad.  Little Leon walked with some of his Laydees for a little while, he blew them a few kisses to keep them going.....

Woo! this marching business makes me thirsty

The impact on the area will be huge for the many children already using the service, not to mention the children not yet born or diagnosed. Not only will the other services in the areas not closing become over subscribed, the financial, family and transfer factor doesnt seem to have been considered at all.  And whilst no one will argue that centres of excellence for surgical procedures are a good idea and vital for the training, research and development of new surgeons and technologies.  It doesnt appear that many have looked into the impact on the families themselves.....

For Little Leon it would mean that he might not see Mummy or Daddy for days at a time, because Newcastle is far far away and try as they might, one of them will have to work to keep the house, pay the bills and pay for petrol to get to and from the hospital.  It will put pressure on Mummy and Daddy because they look after each other, Mummy does the medical, Daddy support and headless chicken running around and Daddy does the driving and supports mummy when shes worried.  Both of them look after Little Leon..........  He might not see his Grammas and Grandads either as they are quite old and dont like travelling too far.  

This is my TOF heart T shirt woo!

Little Leon worries that in an emergency how long will it take to transfer him to see his doctors?  if the weather is bad or the traffic is thick with all the luck in the world, the Embrace team cant fly... If the air ambulance can fly..... will it be available.......  Its such a worry for familes who already have too much to worry about......  

Leons says, go lady put that sun tan lotion on!

So really Little Leon and all his heart buddies and their families would love the unit in Leeds to stay open.  In fact on Tuesday the 24th the decision was referred to the Health Secretary for review into this floored process.

Leon and his buddies say..........   WE SHALL NOT BE MOVED!   

Wednesday, 27 June 2012

Little Leon's Heart Birthday Today!

Today is exactly a year since Little Leon had his surgery!

On Sunday he celebrated with his Mummy and Daddy, Grammas and Grandads, not to mention his fairy god mother and her boy Lil T! Cake and games, a blue heart shaped ballon and being thrown in the air by Uncle Tony! What a day!

Mummy found a poem on a heart...

Dance as though no one is watching you.
Love as though you have never been hurt before.
Sing as though no one can hear you.
Live as though heaven is on earth.

By Souza
Little Leon says he is going to hang it where everyone can see it!

He is currently worn out after a long day of cuteness and will get Mummy to post again soon, now she can do it from her phone :)

Beeg hugs

Leon xxxxx

Monday, 25 June 2012

What a Year....

What a year….

Well. This time last year I was about to board the roller coaster and embark on the longest 24 hours of my life.

We had Taken Little Leon into LGI onto Ward 10 ready for his Heart Op. He had started to decline quite rapidly in the previous few weeks, and the surgery that they had hoped could wait until he was 18 months old had been brought forward, bless him he was only 7 months old. Leon settled in accompanied by the erstwhile Dr Noel Bear, who would stay be his side all the way through.

 He had his Milk and settled down for the night. Helen would stay the night with him, I went home (I’m not good in hospitals at the best of times) to try and get some sleep, yeah right, that happened, ( Not!). I doubt if Helen got any sleep either, but the night passed. I got to the LGI Early so I could give Leon a bath, don’t know why, it just seemed the thing to do. 8.00 came and time to take Leon down to theatre, they sent a trolley for him, but I was determined I would carry my Son down.  Off we went, down the corridor, the lift and into the anaesthetic room. I passed Leon over to the team, then, after 8 Months of doing the “man thing”, you now the sort of thing, being strong, logical, philosophical on the outlook (His chances were less than favourable) , I crumbled, wept like a child, all the emotion since his birth and the issues just flooded out. Get a grip man, I thought, but for 10 minutes or so I was gone. Helen by contrast was quite calm & composed, having got herself to the, “well, we’ve done all we can now” stage, so with heavy hearts and the prayers to many different Gods, and hopes and wishes of many people on many continents we waited…

We had decided, that as the op was expected to take 8 – 10 hours, we would get out of the hospital and try and pass the time around Leeds, We went and had breakfast, It was a glorious day, hot, sunny, not a cloud in the sky (could it be an omen!), we went and looked around a few shops, had lunch, then we went to the pictures, I can’t remember what we saw, but it passed the time… We went to eat something, you know the feeling, don’t know what to do, so I’ll eat, eating for eating sake, but it passed the time.

5.00pm came 8 ½ hours in, no phone call yet, best go back and wait, so off to the last refuge of people waiting for others in LGI, Costa Coffee.

6.00pm came and went, more coffee…. The inane chatter of nervousness, poor Helen, I must have driven her mad.

7.00 came 10 ½ hours in, still no news, more coffee….

8.00 came 11 ½ hours in, people, with the best of intent, ringing / texting asking for updates, nothing to tell. Starting to get twitchy…, more coffee..

9.00 came 12 ½ hours in, what’s happening, mind working overtime, telling myself no news is good news, not really believing it..

9.50 the phone call, can we go to PICU the surgeon wants to talk to us… Outside calmish, inside panicking..

We were taken to a room and waited. In came Kevin (Watterson) looking like a man that run a marathon.
It was Challenging he said, Complicated he said, explained what he had done and what had caused the issues, It’s all a bit hazy now, the details ,I was struggling to take it in. “Is he fixed” Helen said desperate for words we could actually comprehend in our frazzled state. ‘Yes’, he said, ‘best I could, He will have issues later on but I’ve done the best I could at this time!’

Leon had literally just come back onto the ward, so we had to wait more, another 45 long , long minutes passed. Then, the sister says do you want to see him, silly question….

There was my boy, pipes, wires, tubes and god only knows what else going in and coming out of him, did we see that, no, all we could see was that the boy was PINK, not the dusky blue we had got used to, but pink, baby pink, normal pink, flesh pink, how good was that!

Now, obviously he was still in a bad way, the old cliché of the next 48hrs is critical still applied, but Leon had got passed the hard bit, He just had to fight now.

We stayed with him a while, but he was heavily sedated, and we were exhausted, so we went home, We only live 20 mins away from the hospital, so could be back as soon as if needed, but we needed rest, and would need our strength when he recovered.

The next day we were back, he’d had a good night, stable across the board, we breathed a sigh of relief. During the day, the deafening silence of PICU only broken by the occasional bleeping of the machines. The nurses, magnificent as ever, never too busy to answer questions and tried to re-assure us at any opportunity. The Surgeons came and went, looking at his notes, checking him, nodding sagely, saying very little, assuring us he was in the best hands. (We knew that already..) It was a long day, we left him again overnight in the safe hands of the nurses.

Now, some people may find it odd that we went home, I was not an easy decision, but to have stayed would have served no purpose, he was sedated, his condition was stable, we lived 20 minutes away if any thing happened, the last thing the nurses needed was a neurotic bloke asking questions all through the night and generally getting in the way, plus it was the right thing to do for US, may not be for everyone, but it was for us.

That Night ( Surgery + 1 day) we got a phone call, my heart sank when they said it was the hospital, but,  Good news, they had taken Leon of the Ventilator (well he’d basically taken himself of it!) the boy was fighting…

Next day we arrived, he was in a space age type cooling bag, he was overheating (after being too cold the previous day) nothing to worry about they said… easy for them to say..  Helen read stories to little Leon, He squeezed her finger, he knew we were there for him, relief all round. He opened his eyes for a little, I could see his pain, I wept…. ( hidden from the mrs of course…) The days were long, the Staff superb, progress slow. Home again….

Surgery + 3, We arrived, Leon was being moved, nearer the door we joked, yes they said, Into a side room.  The privacy was nice, we were reassured by the fact the nursing was not as intensive and that a few machines less were being used, gradually being weaned off the various drugs that he had been on. Mr Watterson came that afternoon. Spent quite a bit of time looking at Leons charts etc, had a long chat with his registrar and the nursing staff , looked up and said “ I think we’re winning” and wandered off. I could have done cartwheels, never has two words meant so much….

Leon tried to cry that day, but his throat was so sore from the Vent tubes all we heard was a little raspy squeak, he looked so fragile laying there. The physio’s came twice a day, hi was retaining fluid on his chest. So he was suctioned out regularly, not pleasant to watch.. The rest of the day came and went, Nurses doing what they do, us feeling helpless, Leon battling on… Home again.

Surgery + 4, Today was to be a good day, Leon was making noises, too much it turned out for PICU, so they evicted him to HDU (Poorly babies make no noise, the Sister told us! And it’s true.)
SO we were moved, Drains, Pacing wires, machinery et al, up to HDU, Nurse Steph on duty, Ouch! As she clobbered me, One on account she said, on account of what? on account of something you’ll do… She knew how to treat me, that’s the beauty of Leeds, The staff, from Cleaner to Surgeon, every one a star.. 
Once we had been moved into ICU I dared to believe that Leon would recover, He was more alert, We got to Hold Him, 4 days without being able to hold your little one is a lifetime it seemed, he still had drains and pacing wires in, so it was a logistical nightmare, but we managed.

Surgery + 5, Still small improvements, today would be the day his pacing wires would be removed, another major step forward, Still too much fluid for comfort, but hey we were making progress. HDU is an odd place, the meeting of Just going & just been, people wearing the mask of uncertaintanty for the future along side people wearing the look of relief that the worst may be over. Friendships made in that place may last forever as we all share a strange unseen bond that few people have.

Surgery +6 Still Drainage issues, but painkillers reduced, Leon is more active, but winces with pain trying to understand what has happened to him, all we can do is hold him on occasion and tell him its ok. The days are still long, but a little brighter, Leon is responding to treatment well and whilst not out of the woods, we can see daylight.

Surgery + 7 Evicted again, turfed out onto the ward, A good sign, Still  got the drains in, but everything else looking good, dare we hope, dare we believe that he will be home soon……

Surgery +8 – 13 The Drains finally removed, regular checks show |Leon to be progressing well. Better that expected they said, better than we could have hoped. After Dr’s round on Day 13, all looks good, “Want to take him home?” oh how sweet that sounded,..

Now, Leon still needs more ops, He had one in February this year and will need more through his life, but the very fact that he has a life to look forward to is testament to the Skill, Care and understanding of the Medical Teams in LGI. To His surgeon Mr Kevin Watterson I owe the life of not only Leon, but also that of my Father whom he operated on over 20 years ago, how can a man repay that debt…. Thank you sounds so inadequate.

We have spent the last year just doing “Stuff” that families with children without a CHD take for granted, We’ve been to the Seaside, for days out, picnics & parties, met knew friends, found out who our real friends were as well!  We have been on Holiday to see friends from far away lands, all that we never knew would be possible a year ago.

I still have anger over the situation, anger that I feel cheated of the first 7 months of Leons life, anger that I was helpless to do anything, anger of “why me.!” These feelings will subside with time, now that we have time that is.  I can’t change the past, but at least I know we have a future now, and will make sure that we make the most of it as a family.

A quick word of thanks to those special people that have been on the ride with us (and continue to be..) Friends Old & new, family,  people who we don’t personally know but have sent messages and good wishes. A special thanks to the guys from the Rugby League Fans Forum (Church View Farm eggs Supporters Prediction League,) who made a magnificent gesture to us for which we were truly humbled, To Steve & Donna Walker, who tragically lost their own son Also called Leon to an undiagnosed heart condition but found the strenghth to carry on and set up a fund to help others in his name, but my own special thanks to Helen, my wife, without whom I would not have survived this year, Love you.XX

Keep watching & listening folks, the ride aint stopped yet and we’d love you to be part of it still…..

Take care,

Don, Helen and most of all Little Leon.

Saturday, 2 June 2012

Little Leons heart friend, Ebony writes poetry!

Little Leon would like to share Ebonys poem, its about being a Child with CHD
Ebony the Poet :D


Right from the very start
I've had a poorly heart

I used to have spells
I used to go blue
My Mum has told me other children do too

... I don't feel so alone in this scary world
I have my loving Mum who has loved me from day one

I have my many Zips..
But NO more blue lips

I sometimes cry I think you all know why..
It scares me to think of surgery again
But I know I will be in safe hands with the Surgeons on Ward 10

I have lots of friends
I run,dance and join in P.E
When I get tired my friends wait for me

The whole CHD world is sometimes cruel
But my school friends think my battle scars are cool..

I think I'm a lucky girl,with many lovely family and friends
I don't know what will happen to me when I get older
But I do know my Mum will always lend a shoulder

She has wiped my tears so many times
She has sat by me night after night
Many of times I've given her a fright

When I think of what I've gone through
I wonder how my Mum felt
When my CHD life cards were dealt

I just want to say and for you all to see
That having CHD has made Me.......ME.

Ebonys Mum, Sue is very very proud of her talent and it made Leons Mummy cry too!   Little Leon and Mummy love this poem, because it really sums up what its like to have CHD when you are young and trying to grow up with all the other pressures and a heart problem as well.   Leon thinks we are going to see more poetry from Ebony, Heart Warrior :) and Poet.

Little Leon and Big Leon, Heart Angel.....

Little Leon has had a wonderful and very moving gift from Steve and Donna Walker, whose son Leon sadly passed away and became a very special Heart Angel in March 2009.

(Big) Leon was a very keen rugby player and was involved with the Salford City Reds,  before joining Wakefield Trinity Wildcats senior acadamy team in 2008.

Sadly Big Leon collapsed during a match in March 2009 with a rare heart condition which had gone undetected.  He died playing the game he loved, his family and friends miss him very much.  Little Leons Mummy has a wishing candle, she whishes things were different for them, but they loved him and he loved them for Twenty years, sometimes that is enough time to make a lasting legacy of love and cherished memories.

Leon Walker, Heart Angel....

And now to the wonderful gift, a lovely letter with a cheque saying that they have been following Little Leons story and the adventures he has been having and they would like him to go and have another adventure with Mummy and Daddy and use the money to have fun...... Wooo! what can Little Leon dream of........ Wildlife adventures?  Watching fishys swim in the Deep?  Picnic in the park with Mummy and Daddy?  We will have to wait and see........

When Mummy saw the letter she cried, a wonderful surprise and very very kind.

Little Leon, Mummy and Daddy send many thanks and Beeeg hugs to Big Leons family, he is alive in the memory of the people who's lives he has touched.........

And that includes us!


Wednesday, 9 May 2012

Little Leon is back! Hes been a very busy boy!

Little Leon has been a very busy boy, Mummy has been his personal assistant and she has been instructed to update the blog..... So here goes..... At the begining of March.....

Before he went on holiday Little Leon took Daddy and Mummy to watch Wakefield Trinity play Huddersfield.  As a treat he was invited onto the pitch with Announcer Phil, Ian Smith, the one and only Mr... Kinly Cat.......  from the Rugby League Forum.  They had a wonderful surprise for Leon, they decided to donate some money to Little Leon for having a very special heart and doing really well with getting better every day.  Woo he was surprised and so was Mummy and Daddy!   

Leon the game is the other way..... Yes Daddy but my reflection in your glasses is more interesting..
 So Ian and Announcer Phil presented Little Leon with a huge cheque..... it was about three feet long!  Leon says is his piggy bank big enough to fit it in?    All the fans clapped and clapped and Leon clapped as well!   Mummy says she is very overwhelmed by the generosity and wants to say a big big thankyou to all the fans who have supported Little Leon and Daddy and Mummy over the last few months.
Over here ref...... Daddy has some glassess you can borrow!
 Well after the presentation Little Leon watched the Wildcat Kittens, woo they were lovely, the Dolls and both teams warming up.   He was having a great time and clapped both teams when the fans cheered.
Mummy likes rugby because there are lots of men running around wearing shorts......

Mummy and Daddy decided to put the cheque in Leons piggy bank and decide what to do with the money later, Little Leon thinks it would be a great idea to have some toys for the garden so he can play out in the summer.  Mummy likes that idea too!

wooo!  All the people watching the Rugy
So here is a big thank you to the folks on the Rugby League Forum.... from Little Leon, Mummy and Daddy

Thank you!

Saturday, 10 March 2012

Little Leon has fun without Mummy this week.......


Little Leons Mummy has been working down in Welsh Wales this week, she has missed Little Leon and Daddy very much, but Leon and Daddy have been having lots of fun together at home.  When Mummy Skyped Leon and Daddy they were looking very sheepish and laughing, which made Mummy wonder what they had been up to.......  The only way that Mummy could get herself motivated to drove five hours and then back again was to have a goal, that goal was looking for a little red Dragon.....

Off to collect the take away on Leons Trike..

So its looking like Daddy and Leon order the take away and Schlepy bear peddles all the way up the road to the shop to collect it and bring it back. Meanwhile the other bears get it delivered by the bear bus......

Morning Mummy, this is my just awake face!
Daddy sends Mummy a daily photograph, this was Leons morning face!  he was asking Daddy where his breakfast was!  Its the messages that keep Mummy going during the week, it was a long week, a long way away.

Cheeky? Meeee....
Little Leon was waiting for Mummy to get home, Daddy was letting him stay up past his bedtime so he could give her a big hug before he went to bed.  Well, he waited and waited, Mummy had to stopped at Tamworth for a coffee and to stretch her legs!  They are quite long....  and at last she was home and guess who she brought with her?  

Hello Leon, put the heating on so I can feel warm when I come to live with you!

Mummy had been dragon stalking in the valleees, she handnt had much luck when she came upon a train depot with a little Engine inside.  She told the engine she was looking for a little dragon to keep  her little boy company, well, it turned out that the little engine was quite famous and had a dragon all of his own.  So, Ivor, that was his name, chatted to Idris who was the little dragon who lived in his firebox, who said his brother was looking for a new warm home.........  So off they went with Little Leons Mummy to see if the little red dragon would want to come to Yorkshire and meet Little Leon.  He did and Mummy tucked him up in a warm jumper and brought him all the way up the motorway to meet Leon.    When Leon saw him he laughed and gave him a beeg hug, he invited him to stay as long as he liked and he could live with the cot bed gang and have a warm bed in the toy box near the warm radiator.  

Tomorrow Little Leon goes to the rugby with Daddy and Mummy, to meet Announcer Phil and some of Daddys friends, they have made a special invitation to Leon to go and have some fun with tham.