Super boy Reubs' wonderful whizzy wheels!

First off, thank you for taking the time to visit our page, it means more to us than you'll ever imagine! We will try and keep this story as short as possible, however, it is pretty impossible, to sum up, this amazing little boy's story in just a few words but here goes...

Reuben is an extraordinary 9-year-old boy whose life turned out to be a little bit different from his siblings and friends. Reuben was diagnosed with a rare syndrome called Joubert syndrome when he was 6 weeks old. 1 in 100,000 children are diagnosed with this syndrome so Reuben is extra special. Joubert syndrome affects many parts of Reuben’s body which causes low muscle tone, difficulty with movement coordination and significant respiratory difficulties. Reuben is a full-time oxygen user due to his significant breathing disorder and central apnea. This causes Reuben to be extremely tired due to him having a minimum of 20 breath-holding episodes a night. This can sometimes hinder Reuben’s social interactions with his friends and family as the oxygen cylinder causes Reuben’s current wheelchair to be extremely heavy therefore, he is unable to self-propel and keep up with his friends and the people he loves. During a recent scoliosis appointment, we were told that Reuben’s curve had significantly deteriorated and he will now need a brace or postural support to slow the progression down to prevent needing surgery anytime soon.

The above paragraph is just a summary of Reuben's medical conditions but that is such a small percentage of Reubens's current situation. This little boy has been through so many challenging times from the minute he was born to now and he continues to fight and defy all odds. Joubert syndrome is Reubens's main diagnosis but the list is extensive and he continues to fight every single day!

Despite Reubens's many diagnoses, he is the most incredible little boy you'll ever meet. He puts a smile on many people's faces. He loves his family and friends so much and is very considerate of others' feelings and happiness.

The NHS is, unfortunately, unable to provide a sufficient wheelchair for our amazing Reubs due to his very complex medical needs and behavior. However, after speaking to wheelfreedom we now know that we can purchase the perfect wheels for Reubs which can meet all his needs and give him the much-needed independence that we take for granted daily and that Reuben truly deserves. what other 9-year-olds have to rely on their parents to be with them whilst playing with their friends?

Unfortunately, this wheelchair is not cheap and is going to cost around £15000. This is a very large sum of money so we have turned to fundraising to get Reubs what he deserves!

Reuben enjoys spending time with his friends and would love to be able to keep up with them in a powered chair as well as use it at school so that he can reserve his energy for his school work and daily therapies.

Reuben has done a fantastic job at learning to maneuver a manual chair but this is very tiring for him due to his complex medical needs. He has started learning how to operate a powered chair at his school and is now ready to have one of his own.

We know that Reuben’s life expectancy isn’t the same as his friends and siblings so it’s now our responsibility to ensure that the time he has with us is fulfilled and he has lived his life to the max.

These funds will support us with this and they will go towards Reubens's new power wheelchair. We have an appointment with wheelfreedom soon and we will be in touch with regular updates.

There will be many different fundraising events taking place, however, the first one is truly special. Summer 12, Freddie 11 and Roman 8 are attempting a 12-mile walk to raise money for their friend Reuben to get a power wheelchair. They will be joining other friends and family including Reuben’s little sister Willow who is 6. The children will hopefully be able to fulfill the full 12 miles alongside the adults. It is an extremely long walk for them but they are determined to complete it and raise money for their incredible friend and brother.

We will shortly be creating a Facebook page for the fundraising, so will update you all when this is completed.

Once again, thank you all so much <3

Below is Reubens's favorite song and I think it sums him up perfectly!