Get A New Van For Asher Man

My name is Ashleigh (Bourbeau) Hungerford. My sister is Brittany Bourbeau. Her son, my nephew, is Asher Lawrence. Asher was diagnosed with SMA (Spinal Muscular Atrophy) at 8 months old. He is now 11 years old. What is SMA? It is a hereditary disease that progressively destroys motor neutrons - nerve cells in the brain stem and spinal cord that control essential skeletal muscle activity such as speaking, walking, breathing, and swallowing, leading to muscle weakness and atrophy. He has

never crawled, walked or run. His mobility is essentially his power chair of 300 pounds.

In a nutshell, Asher is missing a gene (SMN-1) which produces the protein that builds his

muscles.

The reason I am setting up this Go Fund Me is as follows: In 2014, the family was able to purchase a MV-1 Van (a handicapped accessible vehicle) through several years of fund-raising. Essentially, putting a down-payment down in order to have this vehicle. Unfortunately, parts for this vehicle have become obsolete making it impossible to repair. Most recently after getting Asher in the MV-1 Van at school, parts fell off the ramp. It

was brought to Essex hoping it could be repaired. The family was informed they were not

allowed to work on this vehicle and asked why they actually owned this. Well, that is

obvious, right?

After this visit, they were informed there were two vehicles on the lot. One was second-hand and the other new, both caring a price tag of $64,000 to $70,000. As you can well imagine, this is far-reaching for my sister, Brittany Bourbeau, who is a single mom

with two children, Asher (11) and Hudson (6).

It is essential that Asher have a handicapped accessible vehicle to transport his 300

pound power chair in. It is his only means of transportation. Without a handicapped

accessible vehicle, Asher would not be able to attend school in Fairfax, go to the movies,

outdoor fireworks, school events/activities, visit his family, dinners at the Phoenix House,

but most importantly, he would not be able to be transported to Boston Children’s Hospital where he receives many many procedures (his Spinraza injections every four months and rod extensions on his back Magic Rods) which are crucial to his extended health care.

PLEASE NOTE THAT ALS IN ADULTS IS SMA IN CHILDREN.

I am asking you to donate to this very important cause in order that Asher can have

continued mobility outside his home. Since Asher was 8 months old, he has been through

more than an adult has been in a lifetime. Let’s get Asher a new handicapped accessible

vehicle making just one aspect of his life a little bit easier.

Thank you for your anticipated support.