Friends Fundraise for a 5-Year-Old with Duchenne Muscular Dystrophy
Family and friends are working together for this little boy's dream to come true.
Photo: 9News
Harrison Williams was only 16-months old when he was diagnosed with Duchenne muscular dystrophy (DMD). The family heard the diagnosis while driving on their first family holiday together. They were happily traveling along when the pediatrician called and told them to turn the car around and immediately head to the children’s hospital in Brisbane for more tests.
Scared, but trying to be brave, the family went to the hospital and were told that a blood test had confirmed that little Harrison had Duchenne muscular dystrophy. A neurologist in Brisbane let the family know that Harrison would indeed learn to crawl and sit, but then at about the age of 5, he would begin to lose muscle strength.
Harrison’s condition, Duchenne muscular dystrophy, affects one in every 3,500 boys and progresses until they cannot use their muscles to walk, their lungs to breath, or their heart to pump blood.
Harrison’s mom, Linda, says the condition is a part of everything they do. DMD decides where they go, what they do, and their finances. “We're at appointments all the time, at least two a week,” said Ms. Williams. Harrison tolerates his medical appointment well, but his mother has a difficult time watching him being prodded and poked.
Just a couple of years ago, Harrison Williams' muscles were strong, and he was a carefree, little boy playing with children his own age. He giggled, fell over and ran across the grass, just like all the other kids. Harrison still loves to play with his friends, but now he is not as steady as them. He cannot run and jump, and he spends much of his time in a wheelchair.
Harrison’s condition is rapidly deteriorating; much more quickly than in other kids his age. “He’s only got 12-18 months of any kind of walking left. He’s one of the only five-year-olds needing a wheelchair. We’re looking for a power wheelchair for him, but it’s hard to find one that small,"his mothers went on.
Still, Harrison is an adorable little five-year-old who wants what every little guy at the age of five wants – a trip to Disneyland. "We're not in a position to do this ourselves. We have a power wheelchair we've got to save up for and a new van for that power wheelchair," Ms. Williams said.
Friends and close family members realize that Harrison has a shorter time to live than other kids his age. They try not to think about how this cruel disease is stealing away a normal childhood from this remarkable little boy.
Harrison and his family have lots of friends and people who love him. He inspired a group of Gold Coast mothers who live near Harrison to organize a Family Fun Day to raise money to make Harrison’s dream come true. Claire Parziana, a friend of Linda’s, urges people to go and support Harrison in some way. Claire says, the Williams are a fun and loving family, and you would never know that they were under any financial hardship.
Headlining the fundraiser will be the Voice star Chang Po Ching, and there will be games, foods, and all types of raffles. Star Wars impersonators, magicians, performances from Magic Carpet Ride and Steven Bradbury, the MC, will be there to support Harrison. Everything that can be done to raise money for Harrison is being done. What is so heartwarming, is this little boys’ story has touched the hearts of an entire community.
Understanding Duchenne Muscular Dystrophy
Harrison Williams is running out of time to be like other little boys. He loves Star Wars, playing with his sister Grace and his friends, but Duchenne muscular dystrophy is stealing the strength out of his muscles, and he may only have months to be able to walk with support. Duchenne muscular dystrophy is a progressive, somewhat rare disease, and it affects all voluntary muscles, including the heart and breathing muscles. There is no cure.
Duchenne muscular dystrophy is considered a genetic disorder. Advancing muscle degeneration and weakness is its primary symptom. Duchenne muscular dystrophy is only one out of 9 types of muscular dystrophy.
French neurologist Guillaume Benjamin Amand Duchenne first described this form of muscular dystrophy in 1860, but it wasn’t until the 1980s that researchers identified the particular gene on the X chromosome that leads to DMD. In 1987, the protein associated with the gene was named dystrophin.
A lack of dystrophin or a protein that keeps muscle cells intact is the cause of DMD. Symptoms usually onset in early childhood – between the ages of 3 and 5. The disease primarily affects boys, but girls can also be diagnosed with DMD.
Muscles become weak at as early as age 3. The disease first affects the muscles in the hips, pelvic area, shoulders, and thighs. Later the voluntary skeletal muscles in the legs, arms, and trunk become weak. Often calves are enlarged, and by the early teens, the heart and respiratory muscles begin to grow weaker.
DMD carriers are females who have a normal dystrophin gene on one X chromosome and abnormal dystrophin genes on the other X chromosomes. Carriers of DMD generally do not have the symptoms and signs. However, very few carriers will experience mild skeletomuscular weakness or cardiac problems due to the weakness of the heart muscle.
It has only been in the last few years that boys with DMD survived beyond their teen years. Advances in respiratory and cardiac care have increased the life expectancy of a child with DMD. There are many young adults with DMD who have attended college, gotten married, and have careers and children. Survival into the early 30s is becoming more common, and there are cases of men with Duchenne muscular dystrophy living well into their 40s and 50s.
Some advancements that help those with DMD include standing frames, braces, and wheelchairs. Braces or orthoses support the foot and ankle and can extend over the knee. Ankle-foot orthoses (AFOs) are often prescribed for children to wear while they are sleeping. The purpose of AFOs is to keep the foot from pointing downward. Holding the foot straight keeps the Achilles tendon stretched.
Standing frames help promote better circulation. Just standing for a couple of hours each day with minimal weight bearing is good for developing a straight spine and healthier, stronger bones.
A wheelchair will usually be needed for DMD patients. Wheelchair use usually is gradual, and often total usage is not necessary until the age of 12. Don’t consider a wheelchair as a symbol of disability; think of the wheelchair as a means to be more mobile and independent.
The Muscular Dystrophy Association has an equipment assistance program that will help family members find the best types of medical equipment that increase a quality of life. The Association also has a national equipment program to help provide good condition and gently used wheelchairs and other medical equipment for families who are having trouble finding the right equipment.
And, just like in Harrison’s case, there are fundraising opportunities through the Muscular Dystrophy Association or communities who can help. Harrison’s story is an inspiration to other children who need help fulfilling their dreams. Various organizations have funding campaigns and programs where you can volunteer to help. Don’t forget the adorable children who need help; donate.
