To say that I broke my heart for my beautiful little boy that day is an understatement, as we all want the world for our children don't we?
Since that appointment MANY more have followed, and after quite a few gruelling tests and procedures we finally got a diagnosis last February. His syndrome does not have a name, and as of yet he is the only child/adult on the system with chromosome deletions and duplications in these areas of that scale.
However, all doom and gloom aside, Jared has exceeded the paediatricians expectations and he did smile at 7 months old, he sat unaided at 17 months and last April he took his first independant steps at almost 4 years old.
Alongside his chromosomal abnormalities Jared also has suspected Autism, and cannot speak or sign or communicate in any way other than crying. This causes him to rock back and forth and bang his head against things quite violently when tired or upset.
We approached Occupational Therapy for help with this issue as he was not sleeping as his compulsion to rock and bang seemed out of his control, and we had one very tired little boy with very tired parents trying to distract him from this behaviour.
The OT at that time agreed that this could not continue and that Jared would need something other than his regular bed to sleep in, so I did some research and emailed the therapist a quote for a special padded cot, which is as large as a single bed to keep him contained and secure and safe from harm.
OT have since told us they will not provide this equipment but nor will they write a letter to a charity to say that they recommend this equipment so that we could have had a grant towards it.
At the moment Jared requires 24 hour care and supervision provided by myself and his father. We are both unable to work at this time so that we can provide this care.
We would never be able to save up the funds ( £2250 ) for an ex display model of this bed while we are unable to earn a decent wage. THIS IS NO LONGER AVAILABLE. NEW QUOTE IN PROGESS BEAR WITH US
We respect that everyone has their own battles to face, and money gets tighter and tighter as each year passes, but any amount you could spare would go a long way toward this equipment he desperately needs.
Please share and help us give our son, ( and ourselves ) a decent nights sleep.
DonationsSee top donations
- a friend of a friend
- horn end nursery
- Lori McAlpine
- Aston Martin security man
- Chloe Sargent
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more