Local children’s charity, Simon’s Heroes, has purchased a heavy duty storage unit to house essential medical equipment for a little boy with an undiagnosed neurological disorder.
Joey Parris, 5, from Tamworth, was born blue and not breathing. ‘Joey was a very healthy baby throughout my pregnancy but it wasn’t until he was delivered that we realised something was terribly wrong.’ Joey’s mum Jodie Majer recalled.
‘He required 30 minutes of CPR to bring him back to life and was later transferred to Birmingham Children’s Hospital to undergo tests, which all came back negative. Joey was trialled off breathing support but, in every case, failed to breathe for himself. He underwent a tracheostomy to help him breathe. Changes in his neurological state were identified but could not be diagnosed.’
Joey endured further examinations, including genetic testing, but still no diagnosis could be made. Neurology specialists discovered that Joey’s brain stem is not fully formed which affects his ability to breathe. There is also a build-up of fluid around it which affects his ability to swallow. He is unable to talk and has to be tube fed through his stomach. He requires 24-hour care and is only just learning to walk with a frame. He does have a reasonable level of understanding which is evident through his facial expressions and reactions. He has a growth hormone deficiency for which he has to receive daily injections for the rest of his life. He also suffers from seizures, which are monitored closely, and remains an in-patient in intensive care.
Joey relies on an abundance of medical equipment to manage his condition, some of which had been kept in the house, making for a very cluttered home environment. Other items were stored outside in the garden shed which was weathered, unsecure and prone to leaking, putting the vital equipment at risk of damage and theft.
The new storage unit allows everything to be stored under one roof. It has double doors for easy access to the contents and is extremely robust and well protected from the elements. This has enabled the family to keep everything secure, while freeing up valuable space in the family home.
‘We are thrilled with our new storage unit! It is so much easier to access Joey’s equipment and we have peace of mind that it is now safe and protected. Thank you so much Simon’s Heroes,’ Jodie added.
Author: C Bull