JP's Story

Posted by Michelle Finn on

                             
Written by JP's mom Melissa
On 3rd May 2011, 10 days overdue, my little superstar John-Paul (or J-P) shot out to meet me...

The bond was incredible. Not in the conventional, natural mother way, but in the way that I couldn't shake that something wasn't quite right with my handsome boy. Nightmares of him dying kept me awake at night, his harrowing cries screamed all day. My Mum, Dad and I would tell any health professional who would listen but to no avail, until luck or fate or both intervened and we were finally taken seriously. We were blue lighted to Birmingham Children's where we wouldn't see home for 9 months. We were told to expect the worst - that JP had several holes in his heart, flooded lungs, cysts on his brain, was unable to feed. We were told to get family up, we baptised him. Then a wonderful man, JP's cardiac consultant met us and ignited the hope that had all but been extinguished. "Any child under my care gets a chance". I can still hear him say that so clearly, 6 years on. JP was given heart surgery. We were given the risks of the Surgery before and after the surgery but without it he would die.
The day after the surgery, the genetics team came to meet us to tell us 'the news'. JP had 1p36 Deletion Syndrome. It was rare, it was going to be hard, there was little known about it. They told me so much was unknown but that a lot of children with his condition don't walk, talk, sit unaided, and are totally incapacitated. I remember being ecstatic at the time. They'd all but told me my child would die. This diagnosis felt like a lifeline. It was only later on that night that my heart hurt. Everything I had ever wished for my boy was unravelling. Would he ever hear my voice? I'd read Peter Pan to him when he was in my tummy. Had he heard any of it? All the adventures we were going to take together, just like Peter?
I decided to write to the local paper asking if by some miracle, somebody had heard of this condition and could help me. Through doing this, I didn't know it then...but I'd won the jackpot. The 1p36 Family UK & Ireland found me and added me to the global network of Mums, Dads, Grandparents, carers who also had children with 1p36. A world of support, a second family was opened up. A place I could turn to for advice, a soundboard to question any diagnosis or medication.
JP was doing incredible. He was sitting unaided, he giggled all the time and he even began to weight bear on his legs just after his 1st Birthday. He was achieving great things despite taking over 14 medications daily, keeping his epilepsy at bay. After an MRI at 6 months old we'd been told to expect JP would never walk, talk so he was doing things we never thought possible.
But JP's heart had developed a condition due to the first operation he had. We knew it was a risk. He was growing tired. Each day he could do a little bit less before falling asleep.  He was under the care of the Hospice and we made sure he had a wonderful time. Trips to wildlife parks, train rides, swimming with his big cousins. On 12th July, John-Paul gained his wings and joined Neverland. Even now, we are still very much a part of the 1p36 Family. We have a bereaved parents group to help support each other and John-Paul is forever  remembered and his life forever celebrated by our 1p36 Family.

Don't forget our fundraiser for 1p36dsa. 25% of the profits from ALL the sales this month will be donated to 1p36dsa.org. Shop For an Amazing Cause.
Just click on the home or catalog button above to shop.






 
 

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