Harrison Williams' Fund
When Harrison was born in2013 we thought our lives were complete and our dream would be realised to go on and have a normal everyday life.
But by the time Harrison was 1 though he was definitely not reaching his milestones and through the help of a great GP we were referred to specialists.
After several tests, we got a call while driving to our very first family holiday together. We had been several hours on the road when the phone rang and the Pediatrician told us we may possibly have to turn the car around and go to the children's hospital in Brisbane for further examination. We put on a brave face for the rest of the holiday.
We were referred to a neurologist in Brisbane and told that a blood test had confirmed that our little boy was shown to have Duchenne Muscular Dystrophy. I didn't know what this meant.
This is now known to me as a fatal form of Muscular Dystrophy. 1 in 3500 boys get his and rarely girls. I was told that Harrison would most likely indeed learn to do all these things he was delayed in doing, sitting and crawling, but then, around the time he reaches primary school age his muscle strength will deteriorate. He will, like all the others kids like him, have to resort to a wheelchair by around age 7, over time his muscles to breathe, his ability to eat and his greatest muscle, his heart will fail him. On average kids with Duchenne may make it to their 18th birthday.
I have started this fund for him as over time I will need to give up my part-time job to become full-time carer for Harrison and I stress a lot about his and our future. I am doing everything I can think of to prepare for his future and make it as full and as happy as any other kid out there.
Any contribution you care to make to this fund is being set aside for assistance aids, medication and incidental costs directly related to the effects of Duchenne Muscular Dystrophy.
I thank you for your time for just reading this far and even more grateful for any contribution you may be able to spare.
Linda - Harrison's mum
While it is only October there have been already 3 meetings up at the school as well as a transition morning for Harrison. There is definitely one or two more before the school year ends and a few more transition mornings for Harrison.
While I am making arrangements for the standard items required for my son to begin school: obtain uniforms, lunch boxes etc, we've also had to take delivery of a wheelchair. A wheelchair for him will be used as a support to counter fatigue.
We took delivery of the wheelchair this week and it's no exaggeration to say Harrison is happy to have it.
Having the wheelchair has brightened his spirits as well as beginning lessons with Riding for the Disabled.
We are very grateful for the support in all its forms Harrison has received.
His calf muscles feel like hard little masses and people who have no idea about his condition are making remarks more and more like how great an athlete he will be with strong leg muscles he has now. They don't know he's destined to become reliant on a wheelchair.
Then on the weekend his Achille's tendons tightened and he started walking around on tip toes for more comfort.
His dad and I have to bite the bullet and admit we need to look at night splints, We've learnt he will have to ideally wear these braces from his feet to his knees for about 8 hours a day/night to keep his Achille's Tendon stretched to allow him to walk for a few more years. His Physio noticed tightening in his left ankle due to Duchenne at the last appointment now too. We are now concentrating on more stretches to delay any more tightening anywhere.
It will take time now to get these night splints. We now wait to find out about styles, wait times and costs. I am told Harrison gets to choose from a variety of kids prints and even have ones that light up!That for me doesn't make it any more fun. Hopefully for Harrison it will.
We are so grateful to everyone who has helped Harrison in so many different ways since Harrison had his diagnosis. People have generously donated money, items, arranged activities and also their time to help our son. It's been truly amazing and humbling. To all those people we cannot thank you enough.
It has taken a little while to adjust to the steroids for him. The poor kid doesn't deserve this.
He's getting a little stronger and gets up some speed in his own version of running/waddle.
We have got his physio's OK to enrol Harrison in a version of kindy soccer (yes UK people it's called 'football'). As long as he's given enough rest periods and perhaps become goal keeper if necessary than all should be good. We start this weekend for a trial.
We also await his special needs trike. The funding has been approved by Community Aids Equipment and Assistive Technology Initiative and we now await its arrival. It will give him a lot more independence and mobility.
A little bit about Harrison's condition for those unsure:
Duchenne is an inheritable and fatal childhood disease affecting 1 in 3,500 newborn boys. In our case it wasn't inherited. In Duchenne, boys begin to show signs of muscle weakness as early as the age of 2. The disease gradually weakens the skeletal or voluntary muscles in the arms, legs, and trunk. Progressive muscle weakness often causes Duchenne patients to become wheelchair bound before the age of 12. As the disease worsens, the weakening respiratory muscles lead to respiratory failure. The cardiac muscle is also affected and recent figures estimate that around 15 percent of Duchenne patients die of disease of the heart muscle.
At present, there is no disease-modifying therapy for Duchenne available for the majority of boys. In addition to surgical and physical therapeutic measures, glucocorticosteroids are used in Duchenne. Clinical studies with glucocorticosteroids have shown a prolongation of the ability to walk of approximately 2 years, albeit accompanied with (sometimes severe) side effects. However, glucocorticosteroids are not able to induce the production of dystrophin-like proteins and therefore do not alter or impact the underlying cause of Duchenne. Other available treatment is mainly supportive, such as physiotherapy, wheelchair and other mechanical support (braces), scoliosis surgery, assisted ventilation and treatment of respiratory infections.
As you can imagine Harrison has a lot to deal with ahead of him. We are thankful to all the offers of support we receive to Harrison's medical needs.
He's a special little guy and he makes the world a better place with his smile and cheekiness.
Harrison started his journey with steroids. One week on and one week off. It is suppose to give his muscles a small boost to keep him from needing a wheelchair a little longer and give his lungs and heart extra strength.
Steroids will be his everyday routine now and thanks to everyone's support the benefits of this drug will be easy to access.