The Allen Family Duchenne Story
Hi, I am Karen Allen and I live in Petawawa, Ontario with my husband Duane, our son James, my daughter Danielle and my stepchildren, Nathan and Rebecca. Although my son James lives with Duchenne muscular dystrophy (DMD), my journey with the disease started way before James was born. Below is my story with DMD.
Karen’s Connection to DMD
The story starts on October 13, 1965, when my brother, Kevin, was born in Middleton, Nova Scotia – and by all accounts, he appeared to be a healthy baby boy. I was born just two years later, and we quickly became the best of friends. At the age of four, Kevin began showing signs of weakness and after several trips to the Isaac Walton Killam Children’s Hospital in Halifax, he was diagnosed with DMD. By the age of seven, Kevin started to use a wheelchair full-time. In spite of his challenges, our family of six worked together to take care of Kevin. Dad built a ramp for easier access in and out of the house; a folding ramp to make the van more accessible; and, a seat-belt system to keep Kevin safe when traveling in his electric wheelchair. Unfortunately, my brother Kevin Ralph Wakeling, lost his fight with DMD on Wednesday, January 28th, 1981 at the age of 15.
Knowing that DMD is a genetic disease, my two sisters and I were tested to determine if we were DMD carriers. I have known since the age of six that I was a carrier for DMD but I didn’t fully understand its significance until later in life.
In 1997, my older sister Cathy gave birth to Richard (Ricky) Kevin Michael Tiedjens, who was born with DMD. Due to advances in medical technology, Cathy knew Ricky would have DMD before he was born, which prepared her to deal with the impact of the disease. Despite living with DMD, Ricky continues to amaze us with his artistic abilities and will turn 22 this June.
In 1998, I gave birth to my daughter, Danielle Marie Chantal Hamel. Recognizing that I was a carrier for the DMD gene, my unborn baby was screened. However, when the screening revealed I was carrying a girl, the lab did not engage in further testing. Recently, my daughter Danielle learned she is also a DMD carrier.
The Allen Family
Duane and I met in 2005 and married in 2007. A second marriage for both of us, we blended our families – Duane’s children (Nathan and Rebecca) and my daughter (Danielle). The next addition to our family began in 2009, when Duane and I started discussing the idea of having a baby of our own. Despite my advanced age and the risk of having a son with DMD, when Duane returned from deployment, we decided to have a baby. I became pregnant immediately and in June 2009, I learned I was having a boy and that the DMD gene was present. The news was devastating, but we absorbed it and informed our families. Although my family had been through this twice before and understood the impact of the diagnosis, Duane’s family had never experienced anything like this. After speaking to my sister Cathy at length, I got a sense of what to expect, which allowed us to plan for the arrival of our son James John Allen in December 2009.
Knowing James would have DMD gave us the ability to prepare for a different life than most expecting parents. Early in the pregnancy, we were able to speak with the DMD specialists at the Children’s Hospital of Eastern Ontario (CHEO), where James became the youngest patient the neuromuscular team had ever followed.
The first four years of James’ life were pretty normal. He met most of his milestones on time with the exception of walking, which started at the age of 20-months. Overall he was a happy baby, ate well, slept well and was very cooperative. James continues to be very compassionate and is very empathetic.
Caring for James
Over the past five years, his medical care, appointments and treatments have taken us on countless trips to Ottawa. In July 2016, James started Deflazacort, a steroid that is often used in DMD to improve muscle strength and slow the progression of disability. Later in April 2017, the medication Zometa, was added to his treatment regimen to protect his bone health from the effects of Deflazacort, which can often lead to pediatric osteoporosis. As a parent, it is tough to watch him go through certain procedures, but the progress he has made in dealing with injections and the entire situation has been incredible. James’ is quite the rock star. We’ve gone from requiring several people to hold him and a “magic spray” to calm him down to the tables turning – where James now instructs the nurses and technicians on how to insert the needles required for the medications. We have learned to laugh our way through so much and it has helped us through our DMD journey.
Reclaiming the Day with A Yellow Submarine
Considering we are a military and DMD family, our everyday life is pretty normal. James can still go up and down the stairs, although we will have to make adjustments in the future when that becomes a problem. We have an in-ground pool in our backyard, where 9 year old James practically lives in during the summer. James also likes to walk his dogs (Jack and Duchess) and read Percy Jackson books. James and his sisters also love to play “Just Dance”, where they dance for hours, especially to “Don’t Stop Me Now” by Queen.
Interestingly, James has developed a unique affection for modern British culture, including a love for Monty Python, Queen and of course, all things related to The Beatles. His love for The Beatles began when “The Yellow Submarine” played on the radio one afternoon and the rest is history. His fondness for the group continues to grow. Recently, I took James to see The Yellow Submarine movie which was playing locally to celebrate its 50th anniversary. No word of a lie – he sang every song by heart and impressed everyone who sat near us.
When we learned about SDC’s “Reclaim the Day”, we knew it was a perfect platform to celebrate and honor wonderful boys like our James. Our son is an amazing person. James has taught our family what’s important in life and his zest for life cannot be compared. As the quintessential Beatles fan, a private concert to see and experience a Beatles band would give him memories to last a lifetime. James’ love and passion for the Beatles has helped him and all of us cope with his DMD and has helped put a different perspective on the day we received his DMD diagnosis – it has in essence helped us to “reclaim the day”.
James will be over-the-moon to share his favourite music with his family and friends. We’re thrilled to have been chosen as the winning entry and look forward to seeing James’ dream come to life on World Duchenne Day!