On Sunday 17th of September team Leo's heart warriors will be taken on the pentlands 5 peak challenge. 10 mile walk while climbing 5 of the pentlands hills

1. Turnhouse Hill 506m

2. Carnethy Hill 573m

3. Scald law 579m

4. East kip 534m

5. West kip 551m

This will be a tough challenge but we are doing it for 1 reason our wee heart warrior Leo.

Leo was born with a life limited heart condition called tricuspid atresia, meaning he lives with a single ventricle heart. At just 3 years old Leo already had 2 major open heart surgery BT shunt and the Glenn Procedure and is due his 3rd and finally surgery this year. Both surgeries were done during covid lockdown. Not only did we have to through watching our beautiful boy so poorly and nearly losing him at only 3 months old. We had to do it alone, as with lockdown no one was allowed in or out the hospital. I wasn't even allowed to leave my room without a good reason. Thankfully the wonderful staff on the cardiac ward became my family and definitely helped me survive.

Everyday is a struggle for him, from climbing stairs, walking even for 5 minutes, tiredness and breathless but everyday he fights and he determined to go to nursery, play and be like a normal 3 year old. So as we climb these hills and can't see the end in sight, we will be taken on Leo's strength and pushing on.

You would never wish this on anyone but when I found out about Leo heart condition at my 20 week scan, there was 1 person i reached out to Maxine. Maxine is 1 of my oldest friends and been my biggest support. CHD affects 1 in 133 births but only 1% are born with Tricuspid atresia so what were the chance both of us would have boys with the same condition. To give back to the amazing cardiac ward Maxine is joining team Leo's heart warriors.

HERE JACK'S STORY

Jack is 12 years old. We found out at our 20 weeks scan something wasn’t right with his heart and Glasgow cardiology team confirmed just the next week our worst nightmare that he had very complex heart conditions. Jack was born with Tricuspid atresia, transposition of the great arteries, coarctation and restrictive VSD. He was born in Glasgow Queen Elizabeth and transported to Yorkhill childrens hospital to the Neonatal unit there. He had his first open heart surgery (the famous procedure) at 5 days old. After this surgery things were rough, he became critically I’ll in many occasions struggling mostly with rhythm issues where we almost lost him a few times. He also struggled massively to come off of the ventilator and Cpap machines for just over 8 weeks. He spent almost 3 months in the PICU unit. He unfortunately didn’t manage to make it home before requiring his second open heart surgery (the Glenn) at 3 months old. Jack was just under 6months old when we got to bring him home for the very first time and he came home on many medications throughout the day, with a feeding tube and high calorie prescribed milks. Jack then went on to require his 3rd open heart surgery (the Fontan) a little earlier than we had hoped at just over 4 years old. These 3 surgeries all came with major complications for jack, the 3rd and final open heart hospitalised him on and off for 3 months with fluid building around his heart and collecting in his lungs essentially drowning him resulting in emergency drains being placed to help him as well as a fat free diet to reduce build up around his heart. With all 3 surgery’s his nerves to his eyes were damaged resulting in him requiring eyelid surgery to lift them so he was able to see, damage to the muscles in his back passage making him incontinent and due to the exertion of feeding/drinking from a bottle he had nasogastric tubes and eventually a gastostomy tube placed to feed him straight in to his tummy. His 3 open heart surgeries are just to bide him some time before requiring a heart transplant. Jack suffered many cardiac arrests and may have mild brain damage because of this but he also has a genetic condition called PRR12 which can affect his hearing, sight and he also has autism. Over the last few years jacks suffered massively with SVT episodes which are a medical emergency for him which means we spend a lot of time being blue lighted in to resus to have emergency canulas for a drug to reset his heart to sinus rhythm. This happens fairly regularly and jack becomes extremely poorly with these. He is awaiting surgery for this but due to the complexity of his heart already this surgery isn’t as straightforward to carry out and comes with significant risks for jack. Jack spends a lot of time in Glasgow childrens hospital. We have watched the Yorkhill childrens hospital charity switch over to Glasgow childrens hospital charity and they are amazing all that they provide and do for families going through their toughest times. I am honoured to be able to join in on this challenge to hopefully help give a little back to them for the many years they have supported us and our boy 💙 aside from all of that Jack is amazing! He is such a character and loves to act and dress up, he loves going to panto classes and being in the stage and I know he will go far with this in his life and follow his dream of being the most amazing actor there ever was ❤️

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