Brandans BIG Journey
Thanks for taking the time to visit Brandans JustGiving page, we really do appreciate it.
After nearly nine agonising years my son, Brandan, was finally given a diagnosis - RYR-1 congenital myopathy.. Relieved many parents would think, but for us its far from it. Prior to brandans diagnosis we felt very much alone as there is minimal support for families with undiagnosed myopathy’s. Today we are in the same boat, only a handful of confirmed cases in the uk. On top of RYR1, Brandan has malignant hyperthermia - which is a disease that can cause a fast rise in body temperature and muscle contractions while under general anesthetic. Malignant hyperthermia can be fatal.
Over the past few years; due to the tone of muscles combined with growth, Brandan has developed scoliosis (curvation of the spine). July 2019, we were hit with the devastating news that he will more than likely require surgery to straighten the spine in 2020.
My world shattered, how can my boy go through major surgery when he has the life threatening disease - malignant hyperthermia?!?!?!?
Over the years I had been researching private therapies but of course costing thousands of pounds and not in desperate need at the time, general life takes over and they were put to the back of my head..
When we received the life changing news in July, my head was back in game - private therapy was top of the list which Brandan started in October 2019... We travelled to Edinburgh for the ABR therapy (advanced biomedical therapy). The therapy is a unique gentle hands on therapy that brings about predictable recovery of the muscular skeleton system. ABR techniques are designed to strengthen brandans core, working at a much deeper level than physiotherapy, realigning the skeletal structure and muscles bringing his body into a more natural alignment.
This of course is no walk in the park, since October we’ve had no life, trying to come to terms with the introduction of a new therapy that consists of numerous techniques over nearly 3 hrs per day...... BUT if this helps my son then what parent wouldn’t do it?!?!
We are praying this therapy will align Brandans spine and minimise the threat if not eradicate the need for life threatening surgery.
BUT WE NEED YOUR HELP.
The Belgium based company have told us this is not a quick fix, we all have to work together and work hard.. we funded the first of three visits (in one year) ourselves but sadly it would be extremely difficult for us to fund £30,000 for the therapy alone over the next 5 years, therefore we’ve made the decision to reach out to our friends, family and the community to help us raise the funds.
I really do hope that you’ll support us in our journey.
Thought for today: ALWAYS be grateful for what you have in life and remember our health is our wealth
7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs