The family of a Launceston girl who suffers from an extremely rare genetic disorder are trying to raise funds to help convert their loft into a safe sensory room for her.
Felicity was diagnosed at the age of three with the rare genetic disorder called STXBP1. This means she lacks some or all of chromosome 9 which is needed to retain information. There is little research on this as there are only about 750 cases worldwide. Her grandmother, Sandra Cavaney, says Felicity’s parents “take it one day at a time.”
Sandra said that Felicity is non verbal and Autistic but understands more than she can express, but sadly the little girl has only a five percent chance of ever forming effective communication. In addition she has developmental delay meaning that while she is now five years old she is only mentally at the age of 18 months.
Sandra said: “She also has PICA which is an eating disorder in which people eat things not considered food all the time and so needs constant one-to-one care to keep her safe. She struggles with depth perception and can come across very heavy handed when playing. She runs everywhere and is very fast. We think this is a stim which she uses to self-regulate herself.
“With this in mind we really want to provide Felicity with every opportunity she deserves so as to experience life’s full colour.
“At the moment Felicity shares a room with her sister and is currently sleeping in a cot that has been adapted under a bunk bed.
“However as she grows and becomes taller the more inadequate it is becoming. For this reason the cot has a lock on the side to keep her safe from exploring the bedroom on her own at night. Her parents said sometimes they feel they are restricting Felicity in order to keep her safe.
“We would really love to provide Felicity with a safe space to freely play and explore with all the things that support her sensory needs in the hope that it will help her developmental delay.
“Lights, mirrors and sound change her world and so the extra space we so desperately need will change her world. Having extra space will benefit Felicity as the equipment she needs is big and bulky. Not only will this help Felicity but it will also give her siblings the extra space they need and deserve too.
“However that’s where we need the public’s help. In order to provide Felicity with the space she needs we need to do a loft conversion. The cost is extremely high so her parents contacted their local council who have said they will help them fund part of the conversion, however they need to raise £20,000 to complete the build and satisfy the local council support.”
So far, a little over £1,000 has been raised and anyone who wants to help Felicity and her family can donate at the gofundme page here
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