We are fundraising for a specialised travel bed for our son, Dylan. We would be so grateful if you could help us achieve our goal. This would make a really big difference to our life, it would mean we could have breaks away with him or he could stay the night with family, knowing that he has somewhere safe to sleep without him hurting himself. We have been supplied a Safe space bed for him at home since January 2018 as he was constantly head butting the side of his cot and hurting himself. This bed has been so amazing for us all, as he can’t hurt himself and it keeps him safe. We are all getting more sleep too, having a travel version of this bed would make a big difference. Busy Bees nursery in Bamber bridge, where Dylan goes, are very kindly helping us raise the funds for this. They have some events in June for “Do It For Dylan” month. We are so grateful for their help and support and to everyone who has donated prizes and helped out in anyway, we are very thankful, it means so much to us.

About DylanDylan is now three, he was born with a very rare genetic condition called Helsmoortel-Van Der Aa syndrome or ADNP. When he was born full term but after a tricky birth he stopped breathing and he was taken to the neonatal ward for further monitoring. The doctors had noticed that Dylan had some features that were unusual and thought something was wrong, he was also struggling to feed so had to have NG tube fitted. Dylan had a microarray test to check his chromosomes as they thought he could possibly have Down’s syndrome. We had to wait a couple of weeks for the results to come back but during that time he was still struggling to feed. When the results came back they said everything was fine and to go home and see how he develops. His feeding had improved and we were allowed to go home. At three months old he was admitted to hospital with a chest infection and was in and out of hospital for the next few months. He had videofluoroscopy that tests his swallow and it confirmed that it was unsafe and he was aspirating causing him to have reoccurring chest infections. A few months later he had a operation to have a mic-key button fitted, which he still has now. He still can’t have any fluid orally but he is doing really well with his eating and things have improved so much.He had a heart scan which they found he a bicuspid aortic valve causing a heart murmur, but after regular heart scans it seems to be working fine, but he will need a operation much later on in life. At 6 months old he wasn’t reaching his milestones and was referred to a physiotherapist and OT. He has now learnt roll, crawl, stand and climb. He can walk with a walking frame but not unaided yet, but I’m sure he will get there soon. We were asked if we would like to take part in a genetic reasearch project (100,000 genomes project) when he was round 1 year old as his genetist couldn’t come up with any answers for Dylan problems. Just before Christmas last year we got a diagnosis for him. He’s one of 17 people in the UK who has ADNP. Although there is nobody researching this condition it has helped us connect with families around the world who have children with ADNP and get help and advice from, as doctors here know very little or nothing about the condition. The last 3 and a half years have been a emotional rollercoaster for us and we are very proud of all that Dylan has achieved so far. He very cheeky and happy little boy(most of the time) and hope he continues to achieve his milestones, even if they may take him a little longer.

Thank you for reading and your support