My precious niece Holly is nearly 2 years old, and has been diagnosed with a rare degenerative neurological condition that is terminal. There is no known cure.
The entire family is devestated. Words cannot describe the feelings of despair and helplessness that we are all feeling.
The condition is called Leukodystrophy, and it is believed that Holly has a type of Leukodystrophy known as Vanishing White Matter. In this condition, the myelin (or insulating covering) of the nerves slowly degenerates. Similar to Multiple Sclerosis - this affects the brains ability to send messages to her body.
Her prognosis is a slow regression of physical ability, until she will have little to no control over her body. Although it is different in all children, it can lead to difficulty moving her arms and legs, trouble swallowing, and possibly she may loose her sight. She may develop seizures and/or muscles spasticty.
Holly is unable to communicate easily. Her speech and swallowing is affected. She is not able to walk, and when her condition flares up she looses the ability to crawl or sit unaided. It is expected that Holly will go through periods of stability, and then periods of rapid decline in her condition.
Holly has the most beautiful nature with a smile that warms your heart. But she is unable to sleep easily and she is easily distressed. At times she appears frightened and confused. When she is emotionally distressed, her body often becomes shaky and frail.
All Leukodystrophies have a different life expectency, and every sufferer is different. But eventually Holly's life will be cut short. It is likely that this could be anything from 3 - 10 years from diagnosis.
Holly has an older sister April (3) and a baby sister Ella (5months). Devestatingly, there still remains a 1 in 4 chance that each of her 2 sisters may develop the condition.
From the bottom of my heart I urge you to please assist Holly both through prayers and also financial support.
Due to the circumstances, My sister-in-law is unable to return to work and financially this will have major implications. The assistance that Holly needs now (and will need in the future) is truly too numerous to mention. But some examples may include assistive devices, speech/occupational/physical therapies, respite care and other medical bills. The house that they were living in is not disability-friendly, so they hope to somehow be able to have the ability to buy a home that will be suitable for their challenging needs.
Please consider deeply how you may contribute to their need. My heart has been broken by this event but I cling to "Hope For Holly".
Please Pray with all your might that the Lord will intervene and bring healing and restoration to Holly and to this family. And please give generously - as your financial contribution will be recieved with the most sincere gratitude by this precious family that is TRULY in need.
Colleen Burns (Holly's Aunty).