“We just can’t wait any longer": Urgent appeal to help Peterborough five-year-old Delilah diagnosed with heartbreaking genetic disorder Rett Syndrome

An urgent appeal has been launched to help fund a specialist buggy for a five-year-old Peterborough girl with a heartbreaking genetic disorder, which has caused uncontrollable epilepsy and the gradual loss of all her all skills, including the ability to walk and talk.

Delilah Allpress was developing as expected until she was 18 months old, then she suddenly stopped talking, began to stare blankly and would cry uncontrollably. Her parents, Alexandra and Nathan, were then given the devastating news that she has Rett syndrome, a regressive condition which causes severe mental and physical disability.

She can now only be on her feet for ten minutes before collapsing with exhaustion

Delilah’s mobility is fading, she can now only be on her feet for ten minutes before collapsing with exhaustion and then needs to sleep for around four hours. She can’t communicate, needs to be tube fed as she can no longer safely swallow, and she is losing the use of her hands. She also experiences numerous daily seizures, and her lungs keep going into spasm, which can stop her breathing for up to two minutes.

A specialist buggy to take Delilah outside is vital. Her Occupational Therapist said her current buggy was too small over a year ago, and advised their local wheelchair services that a different type was needed to properly support Delilah as her spine is curving.

Initially they could only offer her the same buggy in a bigger size. However, this buggy can’t accommodate any of the medical equipment Delilah needs with her at all times, which now includes an oxygen tank and a resuscitation kit. The local wheelchair services have since agreed to fund a suitable buggy from an overseas supplier, but with no timeframe for when it will become available, they have advised the family to apply for charity funding instead for the buggy which will cost £4,784.

Now Newlife the Charity for Disabled Children is appealing to the local community to help raise the necessary funds so Delilah can receive the specialist buggy she urgently needs.

Newlife is the largest charity provider of specialist disability equipment for children across the UK.

“She’s not safe and she’s not at all comfortable and we just want her to be as safe and as happy as possible."

Mum Alexandra said: “We just can’t wait any longer. In the buggy Delilah has now we can’t access her properly during a seizure or even lay her on her back to give her oxygen. It means we really can’t take her anywhere much anymore. Also, if we continue to use this type of buggy the curve of her spine will become permanent, but if we are able to use the buggy we have applied to Newlife for then it’s thought the curve can be reversed.

“Not having the right equipment for Delilah makes everyday life so much harder. Right now, she’s not safe and she’s not at all comfortable and we just want her to be as safe and as happy as possible.

“Without a buggy we can’t all go out together as a family together. We have three other girls – Amelia aged seven, Maisy aged four and Penelope, aged one – so not having the right buggy for Delilah has an impact on their lives too. We just want to be able to go out together and do all those things to make memories that other families take for granted.”

“I often feel overwhelmed by Delilah’s needs, but we just have to keep going."

The buggy the Allpress family have applied to Newlife for would provide all the postural support Delilah needs so she would be more comfortable and, as it reclines, she would be able to sleep peacefully. Her parents would also have easy access to her in an emergency and crucially it can easily accommodate all her medical equipment, including the bulky oxygen tank.

Alexandra added: “I often feel overwhelmed by Delilah’s needs, but we just have to keep going. Having this buggy would make all the difference in the world to us. It would be life-changing.”

“It’s clear having the buggy she needs would be life-changing for her and the whole family"

To donate to help Delilah receive the buggy she needs please visit newlife.support/delilah

Alternatively, you can email [email protected] or call 01543 462 777. Always get the bill payer’s permission. Any money raised above the amount needed for the buggy Delilah needs will be used to help fund equipment for another child.

Kam Dulai, Newlife’s Child and Family Support Manager said: “We really want to help Delilah. It’s clear having the buggy she needs would be life-changing for her and the whole family, so we are urging the local community help us raise the funds necessary to provide Delilah with the buggy so she’s safe and protected.