Leyla
Leyla has a metabolic illness
About Leyla
"
Leyla was doing well until at 3 months we noticed she wasn't focusing or following objects with her eyes.
Initially she was diagnosed with delayed Visual maturation, and the Doctors didn't seem overly concerned. However, at 4 months she was diagnosed with hypotonia, and the initial theory was Cerebral Palsy.
An MRI revealed nothing, and all other tests came back clear. However, feeding and weight gain became a serious problem, so by year one, Leyla was given a feeding tube directly into her stomach.
At the same time a muscle and skin biopsy was taken, and after several agonizing months, the devastating news came back: Mitochondrial Disorder - Complex IV Cytochrome deficiency.
In the intervening months Leyla developed complex partial seizures, and other neurological issues.
There is no cure or effective treatment - and it's considered a life-limiting condition.
"
How CHASE help us as a family
"
CHASE has been instrumental in helping us cope in both practical terms, such as short breaks at Christopher's and at home, and emotionally, with counseling and advice.
With Leyla's complex medical needs and her often erratic sleeping pattern, the short breaks CHASE provide gives us time and space to recharge our batteries and to also spend more time with our other children.
CHASE also provide support to Leyla's siblings, as they know the importance of the effects a disabled sibling can have on brothers and sisters.
In addition, CHASE also provide us with valuable expert help and advice in pain control, and regularly liaise with our doctors to find the best route to making Leyla comfortable.
I'm not one for using superlatives, so believe me when I say CHASE is nothing short of superb, and a real friend of my family...
