Your support could help a child like Elsie, who was born with a rare genetic condition called Smith-Lemli-Opitz Syndrome (SLOS) for which there is no cure and limited treatment.

As a result, Elsie has complex medical needs and has developmental delay, very weak muscle tone and delayed growth, and is fed through a tube. She has severe reflux and can vomit up to ten times a day, has a visual impairment with a cataract in her right eye and a cleft palate. She is very small for her age and struggles to gain weight, she is unable to sit up unsupported, and unable to walk, talk or play independently.

“Elsie is under the care of approximately 20 different professionals and on average has between four and five appointments each week. This often involved travelling in excess of 200 miles every week to see the specialists she needs.”

Due to the Coronavirus pandemic Elsie has missed all of her direct weekly therapy sessions. She’s also missed numerous direct appointments with her specialists regarding her eyes, vomiting and feeding. 

“Having to shield has undoubtedly left us feeling very anxious, isolated and exhausted. The risk of regression or deterioration in Elsie’s health due to cancelled or postponed appointments, and the concern about how we can continue without a break is quite simply overwhelming.  We are tired and there have been many times I’ve sat and cried or woke up wondering how much longer we can carry on like this.”

"This year, Family Fund awarded Elsie a playhouse. This has been invaluable for us all during lockdown as it has enabled Elsie to spend time safely outdoors. Her playhouse has meant we can all spend time in the garden knowing she’s safe."

Many families that we support have had to make difficult decisions about how to protect their child, whilst missing vital medical appointments.

Help us ease the strain for families like Elsie's. Please donate today.