Nathan’s CMT Journey

Final Update!  We made it!  We are officially moved to our new home in Mount Pearl.  Thank you everyone again for your help.  We are no longer accepting any other donations. But when we have to rock garden complete we will upload it here as well to share ❤️

Update: we’ve readjusted our goal again.  After our story on CBC aired we had a wonderful family reach out and offer to move our belongings for little cost (gas). This has been a huge blessing.    ❤️

We just need to raise a little extra to cover two tires for the car, minor repair, and vet visit for Luna to get sedative script (which requires a check up).  And misc costs. 

Link to CBC story: https://www.cbc.ca/player/play/video/9.6769596

 Link to online article

https://www.cbc.ca/news/canada/newfoundland-labrador/nathan-pointon-medical-move-1.7542449

I’m a momma on a mission! 

As many of you know, for the last couple years my goal has been to move Nathan to St. John’s. His doctors have been advising this move for some time.

For anyone who isn’t aware, Nathan was diagnosed with CMT (Charcot Marie Tooth) disease as well as Autism/ADHD. CMT is a neurological disease that affects how your peripheral nerves (nerves outside your brain and spinal cord) work and is caused by genetic mutations that disrupts the peripheral nerves functions. CMT causes a range of sensory and motor symptoms, including numbness, tingling, pain, muscle weakness and atrophy, and foot deformities that get worse over time. In some cases, CMT affects the nerves that control automatic body functions.

Nathan currently struggles with loss of feeling from just above his knees down to his toes. His last nerve function test revealed reduced nerve responses in his arms as well but fortunately no noticeable loss of feeling yet in his arms. His CMT is also affecting his Vestibulocochlear Nerve, resulting in some hearing loss and Nathan has been wearing hearing aids for a couple of years now. His balance and gait are greatly affected which leads to stumbles and falls. Most recently Nathan is noticing his legs getting weaker as well as his ankles and the circulation issue seems to be more prominentent as well. His doctor has just wrote a prescription for AFO braces that he can use for now until his doctors in St. John’s can further advise custom leg braces. There is no cure for CMT, it’s a progressive disease that gets worse as he gets older. The best action plan for slowing its progression is regular exercise, plus intensive and ongoing neuromuscular/occupational therapies. When Nathan aged out of care with the Janeway, he was automatically set to transfer to the Miller Center  in St. John’s.

I was hoping to have him moved before now. Over a year ago I had to have an ankle fusion, and the time off work put me financially back quite a bit and my credit score took a hit. I started a new job last September, and I’ve finally climbed out of the financial hole I had been in, and I’m quite proud of doing so, to say it hasn’t been easy is an understatement. Call it stubborn, independent, or pride, but I’ve wanted to do this all myself for Nathan. And I’m making great strides, however my credit score needs time to climb to be able to get a loan for the cost of the move, but time isn’t on our side, we need to make this move happen ASAP. Nathan’s family doctor here in Botwood has provided a recommendation letter outlining why we need to move Nathan ASAP. (Which I’ve posted in pics) (Edited to add: we have had a more detailed doctors note since  this one as well) I’ve reached out to a multitude of organizations that could possibly be able to help with some of the moving costs, but no luck so far.  In order to make this happen ASAP, we have to do a GoFundMe for assistance as well, and even saying that gives my stomach a queasy feeling. I hate asking for help. But I also know how hard I’ve worked towards this as well. It’s certainly not looking for a handout, especially when there’s been times I’ve neared burnout working towards this.

Moving across the province is going to cost a lot. This is the moving budget we are looking at:

Movers: moving our household

contents across the island is going to cost at the very least $2500- $3000. I am in contact with multiple reputable companies to get the best price. Getting a u-haul and having people help me pack up and move is not possible for this move. I’m doing this on my own. I am, however, in the process of selling off many possessions to reduce the amount of things we have to move.

First month (possibly last month too depending on landlord) and Damage deposit.

A couple car repairs and maintenance to make our car roadworthy for the trip.

Also any expected expenses that I may be forgetting. 

I’ll also need to take a few days or possibly a week off work for the actual move and to get my services and office space set up in our new place, as I work remotely from home.  

I know we’ll make it work for once we’re out there, it’s just the ‘getting there’.

This move is vitally important for Nathan on so many levels. Obviously the most important is helping slow the progression of his CMT, but also to help

him thrive on so many levels. There are so many resources out there for disabled individuals, social groups for people with Autism, organizations to help him gain employment that’s suitable for his challenges, help him integrate into independent living in the future, and all of it would just help improve his mental health. He’s been so desperate to move out there and has been stuck waiting on me to make it happen, and while I’m making strides, it’s just going to take much longer for me to save enough to make it happen on my own. I feel guilty for letting my pride and stubbornness prevent me from asking for help before now. And please know how much we appreciate each and every person who is able to help make this move possible. If we raise more than what we need, we will be donating it to the CMT Research Foundation to fund vital research for a treatments and cures for CMT!

Thank you again in advance!

Updates as of May 8th!

All but one organization I’ve reached out about possible funding for moving expenses have responded, and unfortunately they do not offer assistance for moving expenses. So it looks like we have e to rely solely on our GoFundMe.

BUT!

We have accomplished one major hurdle though! Housing!

We have found our new home in St. John’s, Mount pearl actually!  

We also have been approved for a rental subsidy! 

Thank you everyone for the help so far, it partially helped in securing our new place, which is available to us starting June!

Now we just got to get the moving part handled. 

*.*.*.*.*. Making Moves Rocks *.*.*.*.*

Edited to add May 8th: 

Making Moves Rocks! 

Nathan expressed he wants do a little something to show our appreciation for anyone who is able to help us move. Our new place has a backyard and he wants us to create a little rock garden next to our entrance. One large rock in the middle with ‘Making Moves’ painted on it, representing the importance of physical movement in the pursuit of slowing the progression of his CMT, but also as a symbol of this tremendous goal of moving to St. John’s. The bigger rock will be surrounded by smaller rocks, each one representing those who have helped us achieve this move. Each rock painted with a little design and the name of the donor (unless they’ve donated anonymously, we can hide the name on bottom or leave it off). And also for those who haven’t been able to donate but helped in other ways! Then, when we are all moved in and have our rocks painted and placed, we’ll take a picture, share here and send to all the donors/helpers!