Help To Get Harley A Safe Bed/Space
Donation protected
Harley were born 6 weeks early due to pre-eclampsia 24/01/10 weighing only 3lb 5oz. He had to stay in hospital for the first 4 weeks of his life due to feeding problems and not being able to maintain his temperature. As Harley got a little older we started to realise he wasn't reaching the milestones he should have been for his age. We struggled to wean him onto solid foods untill late on as he suffered from reflux. He were late sitting up, crawling and walking. As it were coming up to Harley's 2nd birthday we noticed he wasn't babbling or showing any signs of talking. Harley also started randomly banging his head off walls, floors, doors. We raised our concerns with Harley's paediatrician and any doctor we saw there after. As time went on Harley's head banging episodes began to get worse, he started banging his head a lot harder and didn't seem to feel the pain. Harley also suffered from glue ear in both ears which resulted in him having grommets fitted. Harley's speech didn't get any better and after some input from speech and language as well as teaching himself from watching mr tumbe, Harley could finally communicate to us through makaton signing. After a lot of fighting for appointments to see different professionals, assessments carried out, and plenty of blood tests later we finally got a diagnosis in Jan 2014 just before his 4th birthday. Harley were born with a chromosome disorder called Smith-Magenis Syndrome (SMS). I had never heard of this condition before and couldn't wait to do some research. I couldn't believe what i were reading...His sleep disturbances, self injurious behaviours, infant feeding problems, ear problems, decreased sensitivity to pain, speech delay and development delay all came down to SMS.
Harley's self injurious behaviour has got a lot worse over the last few months and he will now bang his head off concrete floors. He is currentely sleeping in a cot bed for his own safety but at almost 5 years old he is out growing it. Harley is managing to bang his head of his bedroom wall which is resulting in him knocking the plaster of his wall and his head and side of his face to be covered in bruises. He will also bang his head off any hard surface during a meltdown in the day..floors, walls, radiators etc. I have applied to get funding to help get Harley a bed, we were very grateful to recieve £250 from family fund but as it were a voucher for Argos it wasn't suitable as Argos do not provide special needs beds. Harley has no safe area to go to when he is the middle of a meltdown which means he is constantly covered in bruises on his face and head. I have set up this page in the hope of raising enough money to get Harley a safety sleeper bed as will it not only keep him safe in the night at home but it can be taken with him on holidays, sleepovers at grandparents house etc. The safety sleepers we have seen are around £2000 (still waiting for a definite price from a few different special needs websites). If we can manage to raise £3000 we can use the money left over from the bed to buy padding for Harley's room so he can have a safe room in the house aswell as a safe bed :) I am also in the middle of planning fundraising days within the community and Harley's school to help raise the money. Thank you all for your generosity :)
Harley's self injurious behaviour has got a lot worse over the last few months and he will now bang his head off concrete floors. He is currentely sleeping in a cot bed for his own safety but at almost 5 years old he is out growing it. Harley is managing to bang his head of his bedroom wall which is resulting in him knocking the plaster of his wall and his head and side of his face to be covered in bruises. He will also bang his head off any hard surface during a meltdown in the day..floors, walls, radiators etc. I have applied to get funding to help get Harley a bed, we were very grateful to recieve £250 from family fund but as it were a voucher for Argos it wasn't suitable as Argos do not provide special needs beds. Harley has no safe area to go to when he is the middle of a meltdown which means he is constantly covered in bruises on his face and head. I have set up this page in the hope of raising enough money to get Harley a safety sleeper bed as will it not only keep him safe in the night at home but it can be taken with him on holidays, sleepovers at grandparents house etc. The safety sleepers we have seen are around £2000 (still waiting for a definite price from a few different special needs websites). If we can manage to raise £3000 we can use the money left over from the bed to buy padding for Harley's room so he can have a safe room in the house aswell as a safe bed :) I am also in the middle of planning fundraising days within the community and Harley's school to help raise the money. Thank you all for your generosity :)
Organizer
Amy Louise Lyth
Organizer
