Isaac was born in November 2022 with a heart condition called Tetralogy of fallot.
Mum Leanne, tells us a bit more about her son and the fundraising family and friends have been doing in his memory since Isaac sadly passed away in April last year.
Leanne said:
“Isaac was born on 29th November 2022. He was perfect.
“We knew about his diagnosis of Tetralogy of fallot (TOF) at our 20 week scan, and this didn’t stop Isaac from spending only one night in hospital before being sent home to enjoy Christmas with us and his two brothers.
“In February 2023, Isaac started having ‘tet spells’. This resulted in the cardiology team deciding to accelerate his surgery, and his first open heart surgery took place 22nd February 2023.
Tet spells, also known as cyanotic or hypercyanotic spells, are brief episodes when a child’s skin, lips, and nails turn a shade of blue or gray due to a sudden drop in blood oxygen levels.
“Isaac’s prognosis after surgery looked great and we were moved swiftly from PICU back to Ward L51. It was during this time we first met Shelly from Family Support team at CHSF.
Isaac was born with a congenital heart condition called Tetralogy of Fallot (TOF)
“She helped us with accommodation so we could stay throughout Isaac’s admission, gave Isaac his first Katie Bear which we will treasure forever and helped us with financial and emotional support to deal with the whirlwind you go through watching your child have open heart surgery.
“We cannot thank the charity enough and this is why we have continued to raise money in Isaac’s name for CHSF since he passed away.”
Isaac’s family and friends have been fundraising tirelessly for Children’s Heart Surgery Fund ever since he passed away last year. They have so far raised a phenomenal amount in his memory.
“We were discharged home on 4th March 2023 with nothing but pride and honour at how well he did. We were told he would live a normal life.
“Sadly, on 18th March Isaac started to decline, and on Mother’s Day we watched our beautiful, little boy go back onto a ventilator.
“He was transferred back to Leeds and underwent a further three open heart surgeries to try and repair a very damaged heart. He received treatment in the cath lab several times that we later found out was possible through funding from CHSF.
“He was placed on ECMO to try and give his heart a fighting chance but on 6th April 00:15am we had to say our final goodbye as Isaac couldn’t do anymore to stay with us. He was so incredible, fought so hard and we love and miss him every single day.
“During our second stay we again were treated with complete compassion from Shelly. She made time to check in on us and see if we needed anything, Isaac got a second Katie Bear meaning his brothers now have one each to keep, to remember how brave their brother was.
“On the day Isaac died I will always remember that Shelly recognised we hadn’t eaten in a few days and despite me saying that we were fine, she still came with food and drinks for us knowing we would never leave our son’s bedside. This was our one and only meal in days.
“We cannot thank the charity enough and this is why we have continued to raise money in Isaac’s name for CHSF since he passed away.
“We know that other families will have better endings with their children and the ongoing work CHSF do with heart children is amazing and something we would have definitely been proudly part of had Isaac of survived.
“We have had so much love and support from our family and friends. Fundraising has given us a focus since we lost Isaac that gets us out of bed on a morning.
“So far, we have climbed the Yorkshire Three Peaks, friends and family have run marathons and completed walking challenges, we’ve held lots of baking stalls, craft fairs and most recently we held a charity rugby match that we plan to repeat yearly.
“To date we have raised £22,462 for Children’s Heart Surgery Fund and plan to continue to raise more ongoing.
“We are so pleased to have been able to make some donations back to other families who need this support too and we will always be grateful for what we received from the charity.”
CHSF Community Fundraiser Lauren said:
“Leanne got in touch with me in June 2023. It was lovely to hear all about Isaac and the amazing fundraising plans that Leanne and her family and friends had, to honour Isaac’s memory.
“Leanne knew she had a tough target with £10,000 but I knew her grit and determination would get them there. Now, just over a year on from when they started, they’ve raised over £22,000 – which is just phenomenal!
“On behalf of all the team at CHSF, we are truly thankful for this! It will help us to continue our vital support of our world-class Leeds Congenital Heart Unit, it’s patients and their families.”
Total raised for CHSF (so far!) in Isaac’s memory
£22,462.14
Made up from some awesome individuals and businesses as follows…
£15,489.15 on Isaac’s main JustGiving page
£1,580 from Emma Moore completing Great North Run 2023 & Leeds Marathon 2024
£3,540 Dani Bushby completing Leeds Marathon 2024
£455 8 year old Max Matthews walking Pen-y-ghent in 2023
£582 Craig Walton completing various running events in 2024
£75 Stacey Fletcher planned to complete a boxing match, got an injury but still raised funds!
£165 Kirsten Campbell completed ‘March in March’ 2024
£575.99 match funding from Northern Power Grid
To everyone who has donated
🎉 THANK YOU! 🎉
Feeling inspired to take on a fundraising challenge of your own for CHSF? Check out our events page or contact the team to chat through some ideas info@chsf.org.uk 0113 831 4810
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