John Ewen's 170 Mile Walk Across Ireland to Cure MSD in memory of Barbara Ewen July 2018.
Today, for the first time there is HOPE on the horizon in the fight against the clinically devastating disease, MSD. The deficient gene in MSD was identified 15 years ago. Gene therapy is one treatment that could replace the deficient gene and there is now excellent preclinical research in motion which has been very promising so far. Further steps are needed for this and other promising research in order to be able to treat or Cure MSD. This could stop MSD from progressing, giving children like Barbara and many other children across the world a chance at life. Sadly without treatment the life expectancy of an MSD child is less than 10 years of age.
Returning to Ireland, where we first began looking for other families facing MSD, I am now completing a part of my personal journey, while also fighting for others to have a chance for their MSD children. It is with the strength and hope of a father's love that I am now, at 71 years of age, walking a total of 170 miles across Ireland. I will begin on the 19th July in Dublin and finish on 31st July in Clogbrack, Galway.
With each step, I will carry memories of our sweet Barbara, thoughts of other MSD children and their families currently fighting against this terrible disease, and above all the faith that, united together, we will CURE MSD! Please Donate Today in memory of Barbara, and all the other MSD children that desperately need a life changing and saving treatment.
Love Never Dies - A Walk in Memory of Barbara Ewen to CUREMSD
My daughter Barbara Michelle Ewen was born in 1976. She was the second child to myself and my wife Kathleen. When Barbara was slow to meet developmental milestones and actually began to regress what skills she had at 18 months, we began what became a 7-year search for the cause, pursuing diagnostic tests and the best specialists we could find for our precious daughter. No one could answer exactly why Barbara wasn't growing and developing like other children, nor could they explain the reasons why she began to loose what little skill she did have at a young age.
By the time Barbara was seven, my family and I were caring for our beautiful daughter who had become severely physically and cognitively disabled, while still fighting to put a name to the disease wreaking havoc on our sweet girl. With fibroblast testing done on Barbara in 1983, we were finally able to call this terrible disease by name, Multiple Sulfatase Deficiency (MSD). My wife Kathleen and I were told our daughter would not live beyond her teenage years - that she would never regain her health, but rather would continue a slow and painful decline until her death.
Despite all of this, our family held firm to our faith and to a hope that someday a treatment for this disease would be found. We hoped and prayed for a day where the diagnosis of MSD would not be a definitive death sentence.
In 1996, more than ten years after Barbara's diagnosis was confirmed, Kathleen and I reached out to radio stations in Dublin, Ireland in an appeal for help. Knowing that MSD had a genetic cause, and having a clear Irish heritage, we felt there may be other children who were also being stolen by this terrible disease. Before the internet was readily accessible, this plea for a connection was our hope to connect to other families suffering the same fate, and perhaps even start a movement to bring attention to this disease and help their own child.
Unfortunately, our attempts at connecting to other families in Ireland in 1996 were unsuccessful. Barbara continued to decline, yet throughout her life remained "sweet to her core". Barbara passed away surrounded our family that loves her dearly in February 2017, age 40. To date, she is the oldest known person to have battled fiercely against MSD.
Despite loosing our daughter Kathleen and I have remained dedicated to raising awareness of this rare disorder and pushing forward it's chances for a cure. I, John Ewen am a serving board member on the 'United MSD Foundation' along with my other daughter Dr. Jennifer Ewen Frank, MD.
I have connected closely with MSD Action Foundation / SavingDylan.com in Ireland as their goal is the same as the foundation I serve with in the United States. Therefore if you are reading this, I would kindly ask you to donate and please be as generous as you possibly can in supporting my 170 Mile walk across Ireland to help Cure MSD.