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“I feel the event and the JUMP memory book have had a massive impact on our lives, not just for me as a parent but for Layton's siblings too. To watch them forget about how hard life can be and just live in the moment and just be children is amazing".
Layton was born in 2006. Growing up he lived a relatively normal childhood, until 2014 when he got very sick, he was struggling with walking and got extremely tired very quickly, he ended
up having to use a wheelchair. Layton had many tests including, lumber punctures and muscle
biopsies. In 2015 Layton was diagnosed with mitochondrial disease type 1 and he was told he was terminal. Since then he has been diagnosed with other conditions including Von-Williebrand's disease, epilepsy, intermittent vomiting and a sleep disorder. Normal everyday things have now become a challenge for Layton, he can't walk unaided, eating can be exhausting and he can become fatigued easily. Layton finds it hard to brush his teeth as he struggles with gross and fine motor skills.
Life can be very challenging, small tasks that most of us take for granted are huge tasks for Layton.
Layton was invited to attend the JUMP winter memory making party with his family. We jumped at the chance as it's lovely to get Layton out socialising with other children and to spend
some time as a family away from all the routine of normal life.
When we got there, the support session was so lovely and very thought out. There weren't many families invited so this gave Layton lots of space and the opportunity to get involved with everything that was going on, being visually impaired and in a wheelchair means that sometimes Layton doesn't always get the opportunity as places can be overly busy. We also had the opportunity to have a JUMP memory photo shoot in the studio, the JUMP memory book we received is beautiful and means the world to us. When you get told the news that your child is terminal, photos become one of the most important things to have in your life because unfortunately you never know which one
could be your last. I feel the event and the memory book have had a massive impact
on our lives, not just for me as a parent but for Layton's siblings too. To watch them forget about how hard everyday life can get and just live in the moment and just be children is amazing. We would love to attend future events and would recommend others do too, the staff and volunteers are amazing, they were so welcoming and understanding. We're truly thankful.
Stacey, Layton's Mum.
JUMP news is a quarterley update that keeps you in the loop, from hearing all about the inspirational children we support through to our fundraising heroes, we've got it covered !
"Thank you so much JUMP for welcoming us into your family and helping us realise we are not alone"
JUMP!! What a fantastic charity! When Oliver was born with health problems and rushed to Alderhey it was a shock for the whole family. Five weeks of traveling back and to twice a day was not what we had thought his first days would be. It was also hard on our daughter Charlotte who is only 7, she knew her little brother was poorly but didn't really understand. When we were invited to JUMP’s Christmas party it was a chance not only to talk to families who understood, but a chance for Charlotte to have fun and get spoiled! The photographer's were amazing and our book is wonderful! We have memories forever of an amazing day! Thank you so much JUMP for welcoming us into your family and helping us realise we are not alone.
"The photos taken at the JUMP Christmas Party are beautiful and we are extremely grateful for all of the precious memories that they hold"
Arya was born on the 14th June 2016 with Down’s Syndrome and a massive hole in the heart. She spent several weeks in the neonatal unit at Warrington Hospital, we waited four months for her to have heart surgery at Alder Hey, by which time she had already gone into heart failure. It was an incredibly difficult time for us and Arya’s older siblings Charlotte and Noah but the surgery was a success and Arya is now making excellent progress.
The photos taken at the JUMP Christmas Party are beautiful and we are extremely grateful for all of the precious memories that they hold. It was particularly special for Charlotte and Noah because we have spent so much time apart due to hospital admissions. The party was a special time that we could spend together as a family. Thank you to all of the team at JUMP for inviting us and making it all possible.
As a family we can’t thank jump enough for all the hard work they have put into creating these amazing moments and putting a smile on Rubina’s face.
"Rubina has MPS1 Hurlers syndrome. She has had surgery on her legs, back and a bone marrow transplant. Rubina has spent most of her life in hospital. Just like any other teenager Rubina loves to go out, however due to poor mobility she is restricted to certain activities.
This is when JUMP became involved. Up until meeting the JUMP team, Rubina has never had a photoshoot.
We are grateful for all the hard work jump has put into creating Rubina’s memory book. The pictures and memories captured were amazing. It has given us the chance to get together as a family. It was a day to remember!”
Tayeeba, Rubina’s Sister