Brandon is a 13yr old boy very close to our hearts, from Knighton, Mid Wales. A fun loving, adventurous young man, who has unfortunately many health issues to deal with. In the past couple of years his family finally received a devastating Diagnosis of ARSACS Ataxia, a degenerative desease that affects many aspects of Brandons health. Brandons friends and family spent the early months of the first UK Lockdown successfully fundraising for a motorised trike adaptation for his wheelchair with the aim to keep him mobile while retaining as much independence as possible, as any growing boy deserves.

THIS FUNDRAISER IS TO GET HIM TO HIS DREAM HOLIDAY AND FULFIL ALL HIS PLAYMOBIL DREAMS. HE AND HIS LITTLE BROTHER HAVE ADORED PLAYMOBIL SINCE THEY WERE SMALL AND HAVE WORKED ON THEIR COLLECTION FOR MANY, MANY YEARS. IT WOULD BE A DREAM COME TRUE FOR THEM!

Brandons story from Brandons Mum........

Hello everyone. Brandon's mum Julie here, i felt an appropriate time to give out some information and Hope's for brandon, a chance for you to get to know about our gorgeous boy.

So Brandon was born at full term weighing 6lb 7 oz on the 26th september 2008 at our local county hospital. He was born healthy and only when he started to walk did we pick up on his struggles. Brandon was a very fast but clumsy Walker with lots of falls. He went everywhere with his head down at 100 miles an hour!! Smashing his body on anything in his way.

He started to wear insoles at the age of 2.5 years due to having flat feet with the hope these would help his balance as well. They didnt and havent!!

When he turned 3.5 we believed he should of "grown out" of his clumsiness and after a visit to our gp he was referred to our local paediatrician and the physio team.

At the age of 6 brandon was diagnosed with developmental co-ordination disorder (also known as "clumsy child") the title in itself had brandon to a tee!!!!

Brandon through those years up until the age of 10 had regular input from physio and OTs to help him manage his co ordination troubles and other issues he was having.

Wed dealt with his condition and to us he was just our Branflake.

Then after a routine opticians appointment things spiraled. Brandon was sent to accident and emergency as he had papilleddema. Looking back this was the hardest thing to go through but its led us down a good path. After scans, mris, lumbar puncture etc we discovered his spinal pressure was raised. Medication reduced his pressure and the diagnoses of intracranial hypertension was reversed. Horah!!!!!

At this point he was referred from our local county hospital, hereford to our local childrens hospital, Birmingham.

After more tests and a 3rd brain scan we were told Brandon's cerebellum had decreased!! Something we knew nothing about. Thankfully for us someone suggested linking all of Brandon's struggles to a condition. His mobility, eye trouble the lot!!

After genetic tests it was discovered he had a gene issue and myself and richard were then tested. Every parents nightmare...did we cause this? Who? How?

Well the results showed that BOTH of us had shared are defective Gene's. I had shared Ataxia and Richard (Dad) ARSACS. literally a one in several million chance but wed done it!! We were always told that brandon was special this just proved it to us.

Brandon still wears his insoles and has huge support from his physiotherapist and ot and thanks to them they are keeping his mobility up. There are many things that brandon cant do independently but we were learning how to help him from afar and equipment like electric bath chairs and stair lifts are making him as independent as he can be.

Brandon's condition will deteriate and for us weve noticed a dramatic change in his ability since the beginning of 2020.

He isnt as mobile, hes started to slur and most scarily he can choke not only on food etc but his own saliva, (all parts of the condition) and while that's ok this is where fundraising comes in to be able to live the life that he enjoys, to be as independent as possible.

Thank you for taking the time to read this, there really isnt much information on this disease as it is so rare but the Ataxia website is a useful source.

He truly is our one in a million Branston pickle head

THANKYOU FOR READING AND FOR CONSIDERING HELPING.