Josie and Alison

Hi,

I’m Alison (Josie’s mum) I don’t normally do this sort of thing and ask the public for help… in fact I’ve not done anything like this before. I’m not here to give a sob story but more so to raise awareness and ask for help as I’ve got nowhere else to turn.

I’ve worked for the NHS for over 25 years and most of that here in the Thetford Community Nursing Team. Back in 2017 we welcomed our beautiful Josie in to the world to complete our family. As the months progressed I knew something was wrong, I kept taking her to the doctors but it got to the point where I was made to feel like I was making it all up! Eventually in 2020 they started to listen to me and began doing some tests as her behaviour was getting worse and she was not meeting her developmental markers. Then after a long battle she was diagnosed in March 2021 with Smith-Magenis syndrome.

Smith-Magenis syndrome is a developmental disorder that affects many parts of the body. The major features of this condition include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioral problems. It effects only 1 in 25,000 and is relatively new so still lots to be learnt about it!

My reason for doing this GoFundMe page is to raise some money towards the purchase of a safety sleeper which costs £4,000!! I don’t have the money to purchase this myself and I have exhausted every other option including funding and grants. Josie is currently borrowing this from the company as a trial but they want it back next week and I’ve been told grants can take months to be approved . She has become so confident sleeping in it and most importantly she is in a safe environment and let’s her get some much needed sleep. As part of SMS, Josie’s body clock is in reverse. She fights a constant battle of being awake in normal day time hours for school and life but then come night time her natural chemicals are imbalanced meaning she can’t sleep at night like you or I would. Before we borrowed the safety sleeper Josie would sleep no more than 2-3hrs in the night and every sound I would be worried what she is doing to herself, especially as self harm and not feeling pain is a large part of Josies condition. She’s been known to put keys in the microwave and turn it on and has no fear when it comes to hurting herself. Josie started main stream school this week and we are doing everything we can to give her a ‘normal’ quality of life. This safety sleeper has allowed us to do that and I can’t bear the thought of Josie having it taken away.

I understand times are hard and every penny is precious, but if you can spare even the smallest donation I would be eternally grateful xx

Please feel free to reach out to me if you need too ☺️