Jamies family home requires urgent renovations to make it wheelchair accessible as he suffers from Duchenne Muscular Dystrophy.
Wellington
This story is written by Jamie's grandmother, Rona:
My grandson Jamie is 11 years-old. He is funny, has a great sense of humour and is doing well in school. He dreams of one day writing programs for Minecraft, and can, at times be incredibly self-determined. Once, when I told him that he couldn’t go to the park, he crawled across the road to get there.
Unlike many 11-year-olds, Jamie can’t use his legs and is confined to a wheelchair. He has Duchenne Muscular Dystrophy (DMD), a genetic disorder that cause muscles to weaken and eventually stop working. His body is missing the proteins needed to keep muscles intact, which means degenerating mobility. It is a disease more common in boys and symptoms are visible at an early age, though Jamie was diagnosed late at 6-years-old.
When Jamie first came into my care, he did not have proper communication skills and was mistakenly diagnosed as having ADHD. He was reading at Level 2 and would make noises to verbalise his frustration.
Since then, with the right supporting systems and adequate medical care, Jamie has grown into a wonderful young man. He reads at Level 12 now and is very articulate. He never complains about his condition and loves to do things for himself. As his grandmother, I cannot be prouder of his progress. As a person, I find his nature deeply inspiring.
GIVING JAMIE THE BEST
There is no cure for DMD. The average life expectancy is 26 years old, and unfortunately, Jamie’s symptoms are progressing at a faster rate than normal. For however long he lives, I would like to give Jamie the best quality of life that I can. This includes creating a loving and supportive home and family, but also giving him all the tools he needs to make the most out of life. This includes a conducive living environment.
MAKING OUR HOUSE "JAMIE-FRIENDLY"
Me and my husband currently care for 7 grandchildren, including Jamie. They live with us in a three-bedroom home. The children are close and we keep a tight ship and rely on the kindness of friends to maintain a sense of order!
As you can imagine, our family home requires urgent modifications to accommodate Jamie’s growing needs. We need to widen the hallway for wheelchair access (he currently crawls to his room), give Jamie his own room as he requires more equipment and also build a bathroom that can accommodate his needs.
OUR APPEAL
I am going to ensure that we get this house renovated so that Jamie will be able to live comfortably and have as much autonomy as he is able. The renovation will also see the addition of 2 rooms to our house, which gives all children more space, as 7 of them are currently sharing 2 bedrooms.
We are working with an architect who specialises in making spaces friendly for the disabled and hope to get this project completed as soon as possible.
The whole project is estimated to cost $300,000 so we are appealing to those who are able to lend a hand. Every bit helps. For all those donating, we will keep you updated with progress and pictures of our renovation throughout the process, and I am sure Jamie will want to say a big thank you too.
I am a close family friend of Rona and her grandson Jamie. I am motivated to help because Ronas life revolves around these children and as Jamie's health detoriates he will need his own room.
All funds will go towards improving the living conditions for the whole family, in particular Jamie.
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