A small town in Yorktown, New York gathers together to help a 2-year-old with congenital muscular dystrophy.
Christian Dunn is a 2-year-old with a rare form of congenital muscular dystrophy called Congenital LMNA muscular dystrophy. Christian’s muscular dystrophy weakens his muscles as time progresses. He is unable to sit unassisted, Christian can’t stand, and he will never walk.
The family recently bought an electric wheelchair for Christian to help him move around, however, the wheelchair weigh about 300 pounds. Christian’s mother says, “It’s a big deal for him. It’s his first independence. We can’t bring it anywhere.”
Yorktown, New York is a beautiful community that lies in Westchester County about 35 miles north of New York City. It is nestled within forty square miles of rolling hills, farmland, and residential areas. The community was first settled in 1683, and it still retains its small-town hominess and loyalty.
The residents of the Yorktown community where Christian Dunn lives look his dilemma to heart and organized a fundraiser dinner for him. Susan Androsiglio, a good friend of Christine Dunn’s, hosted the dinner at Traditions on Tomahawk Street in Yorktown. The entire town was invited. Almost 200 people went to the fundraiser and paid $35 to $40 per person. They also raised money with a raffle, where people purchased tickets for a chance to win a trip to Italy. There was also a 50/50.
The fundraiser is helping the Dunn family cover financial expenses, making changes to their home, and giving them the ability to purchase the needed van.
Not only the citizens, but the Yorktown Police Department got into the spirit to help raise money for Christian through their annual No Shave November campaign. The Yorktown Police Department is a 59-police member organization that prides itself in protecting and taking care of the citizens of the town. During November, male officers grew their beards just a little bit longer, and women employees were able to dress casually. They used this year’s tradition to benefit Christian Dunn, and they raised almost $4,000 for Christian’s fund.
“The Dunn family and Christian are an inspiration for us at the Yorktown Police Department,” said Police Chief Robert Noble. “We pride ourselves on rallying around those in need in our Yorktown community. Many of us have a lot to be thankful for. The holiday season is a time to remember good people, like the Dunn family, who truly deserve a helping hand. Christian has a friend in us, and we’re hoping the community will consider helping us help the Dunn’s get that vehicle that they need for Christian.”
What Is Christian Dunn’s Disease?
Congenital muscular dystrophy is a part of a group of muscular dystrophies that are noticeable at or near birth. They are usually genetic and degenerative diseases that affect the voluntary muscles in the body.
Christian’s disease is rare and called LMNA related congenital muscular dystrophy. The illness is like other muscular dystrophies and is a disease that causes muscle weakness, motor difficulties and lack of control in the movement of the head, respiratory and cardiac systems. De novo mutation or spontaneous mutations can also cause the disease. The disease was first identified in 1999, and research is ongoing.
“Your genes tell your body what to do and that gene tells your body to make lamin protein, and his has an error, so all of his cells basically fall apart,” Christine said. “So, his muscles are getting weaker, he’s getting skinnier, and eventually it affects his heart and lungs. It’s a hard journey, but he’s definitely here for a reason.”
Mutations on the LMNA gene are responsible for congenital muscular dystrophy. This gene is located on the long arm of chromosome 1 and encodes the proteins lamin A and lamin C. These proteins are tasked with providing stability and strength to cells. They play an essential part in the role and organization of chromatin and nuclear membranes.
Congenital muscular dystrophy, LMNA-related is an inherited muscle disorder. Muscle weakness presents from birth to early infancy. Those infants who are affected have low muscle tone and poor spontaneous movements. These babies have a delay in motor development in addition to joint and spinal rigidity. The often have weak necks and are characterized by flopping heads.
Over time, the muscle weakness of congenital muscular dystrophy (LMNA-related) causes children to have issues performing certain tasks, like eating and breathing. Breathing problems come from restrictive respiratory insufficiency, which occur when muscles in the chest are weakened. This problem is life-threatening, and many affected children need support with a breathing machine or mechanical ventilation.
Muscles weakness may improve, stabilize or worsen in the short term. However, as time goes on, there will be progressive weakness and joint contractures, respiratory problems, and spinal deformities.
Christian will never live a normal little boy’s life. He has scoliosis, needs breathing support, has contractures and suffers frequent pneumonia episodes. Eventually, the disease will cause problems with both his heart and lungs. His life is limited.
There can also be a cognitive impairment that ranges from intellectual disability to structural brain and eye abnormalities. Seizures are often a problem.
The Dunn family, plus friends and other family members, are sharing Christian’s story through social media and are making the most of the time they have left with Christian. Making the most of the time they have means adapting their world to accommodate Christian’s’ disabilities. Expenses are enormous not only for the specialist visits and necessary equipment but for modifying their home, finding an adaptable vehicle and the reducing work hours to take care of Christian.
Christian doesn’t have the cognitive impairment that is often associated with this form of muscular dystrophy. He’s a smart little boy and longs to explore and learn about his world, and he also needs to have independence. His power wheelchair gives him this independence. When Christian tried his power wheelchair for the first time his eyes lit up.
With his wheelchair comes many more expenses. The family needs a van that can be retrofitted to contain a lift to transport the 300-pound wheelchair. The wheelchair is a part of Christian’s life, and this makes the van a necessity. The family will need the van to travel anywhere – even to the park for a day outside.
In addition to the fundraisers in Yorktown, there is a GoFundMe page for Christian Dunn. All money is given directly to the family to take care of expenses for the wheelchair, the adapted van, the remodeling of their home, and out of pocket expenses for specialists.
Christian Dunn may not live a long life, but what life he lives is filled with joy from his family. He is a beautiful child with a keen mind and a will to make his life special.