Our names are Heather and Lewis Franklin, and our two children are Michaela, age four, and Nathaniel, age two. After a four year battle of trying to determine what was making our children suffer, we finally received the diagnosis of Congenital Disorder of Glycosylation Type 1A for both children. This disorder is genetic, degenerative, and incurable. It is also very rare, affecting only a known 500-700 people in the world. This disease causes defects in the process of glycosylation, or how the body attaches sugars to proteins. The effect of these defects is developmental delay, and muscle and bone problems. All of these problems become more severe with age.
Our children currently suffer from small cerebellums, this is the area of the brain that affects balance, coordination, and motor planning. As a result, neither child can walk, or even stand on their own. They both are hypotonic, suffering from low muscle tone; they also suffer from reflux and have significant eye problems. Michaela has seizures, and Nathaniel is very delayed in speech (a known side effect of this disease). Michaela has already undergone three surgeries and Nathaniel two. Because the disorder often attacks the liver, kidney, and brain, we will have yearly tests and MRIs, blood work, constant therapies, and further surgeries to attempt to control the symptoms that arise as the children grow.
Lewis and I are seeking your assistance. At the moment, we are not only facing medical and therapy expenses, but we are also preparing for two children in wheelchairs. Due to poor endurance and motor planning, Michaela will be moving into a power wheelchair and we will soon be ordering Nathaniel's first wheelchair. To accommodate a power wheelchair, we will have to buy a conversion van. A van that is built to carry two power wheelchairs is incredibly expensive, and we are asking for any help possible in raising funds to cover these expenses. Thank you very much for your help and support in this matter. We are incredibly grateful for your love, support, and sacrifice in helping us care for our children as needed.
You are a great blessing!
Heather And Lewis Franklin
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