“Our wonderful daughter Elsie was born in October 2017 and spent a total of 17 days in Special Care before she was able to come home.
When Elsie was just 2 months old, just 2 weeks after Christmas our whole world was turned upside down when we received the news that Elsie was born with an extremely rare genetic disorder called Smith Lemli Opitz Syndrome (SLOS) to which there is currently no cure. Sadly, children with the most extremely severe cases are either miscarried or often die just a few months after birth. SLOS is so rare that it only affects an estimated 1 in 20,000 to 60,000 newborns.
SLOS means that Elsie is unable to produce enough Cholesterol for normal physical and mental development. Wev’e been told not to expect much from our daughter in that she is unlikely to ever walk, talk or eat orally, however we’re determined to support Elsie to achieve her own potential.
Very little is known about SLOS in the UK and there is little research being undertaken here. We have been fundraising locally to raise money to take Elsie to America to see specialist Doctors, to meet other families of children with SLOS and to learn more about how best to support our little girl both now and through her future. We have been overwhelmed by the support we’ve received and have recently exceeded our target. Money in excess of the cost of our trip to America will be used to support Elsie, I.e specialist equipment etc.
Elsie is a delightful and placid baby, she loves cuddles and music. Elsie is now smiling, babbling and rolling over from her side onto her back. Elsie enjoys baths and splashing about in water! She is certainly a determined little girl, she knows what she wants and likes and already seems to know how to get it!
