As described from Dad... (Chad)
My daughter Olivia is going to be 7 years old on October 10th. She started having seizures at 10 months old and at 2 years old after many visits to specialists and clinics, Olivia received a diagnosis from the genetics and metabolics specialist at Cleveland Clinic.
Alexander Disease is the rarest form of 40 types of Leukodystrophy and Olivia has the 10% rarest form of this type.
It can be summed up this way:
It can be understood as "white matter disease." The myelin "white matter" in the brain is processed improperly/destroyed by the brain.
Her diagnosis is infantile onset which is the most aggressive form.
People with Alexanders Disease slowly lose the ability to function, in other words, their development actually goes backwords. What normally takes the life of a person with this disease is the loss of control of the body and secretions and ultimately aspiration into the lungs leading to pneumonia.
Olivia was sitting up and playing with blocks at age 2 and she slowly lost her ability to function over the last 3 years.
She has now lost her ability to sit up, hold her neck up, or even eat.
She must lie on her side full time in order for her not to choke on her airway and secretions. She feeds through a gastronomy tube "g-Tube" where she is fed a liquid diet and takes her medications.
We have to continually use many types of medical equipment and we are often up at night suctioning and cough assisting her as well as regulating her Oxygen. Her best times are during the day where she is fairly stable and enjoys her favorite cartoons and movies.
She has many specialists that she sees from pulmonary to neurology and we have appointments for her monthly if not weekly. People with Leukodystrophy go through symptoms such as; seizures, urinary tract infections, precocious puberty, enlarged heads, skin disorders, and the list goes on and on. There are even issues with bed sores based on the need to constantly be in the same position. Although we work with her to keep her re-positioned the best we can. Olivia has many of these and sees specialists or each of them as well and equipment specialists for all types of equipment needs from shower beds to braces for her arms. At bear minimum it takes a lot of work and appointments just to get Olivia to see her specialists.
At this point, our goals and visits with palliative care at U of M has been to keep her as comfortable as we can.
In the fall of 2012 we went on a make-a-wish trip to New York so that Olivia could visit the real Elmo from sesame street. That was one of the last times were able to see her giggle and smile and that was very hard to see her lose that. We now rely on her eyes and slight mouth movement to understand her.
We have seen children with this disease live to be in their early 20's however, the majority of children with this onset have a prognosis that is usually 7-10 years of life. We just thank the Lord for every second that we have to enjoy her and it is truly our privilege to care for her.
A lift Van would allow us to take her to her appointments at U of M Children's Hospital and all of her specialists in a much easier way. Currently, we are traveling in a ramp van that we have outgrown and carries a heavy debt load which has continued to be a burden but a necessary one. We have to lie her on a foam bed on the floor and transfer her when we arrive. (long story) We are waiting on a custom wheelchair bed being built by Gunnel Inc. here in Michigan and it will be too big for the current van we have which is also very difficult to provide her the care she now requires. After testing various lift vans we recognize that we will actually need a full size Ford transit van in order to have the needed space.
As well, this van would give our family a lot more freedom for the ability to take Olivia places and be able to include her equipment to the capacity of caring for her the same way we would at home. Giving us the opportunity to actually travel somewhere as a family. I so badly want this for my family but also my wife who deserves it so much. This way our entire family can go places together.
This is going to be such a huge blessing for my family and I cannot wait! I am truly looking forward to the day when my Real Estate career hits its potential and I can do this very same thing for another family.
Please follow this link for a very powerful video
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