Bethany, the seventh child of David and Lindey McIntyre, was born in London, Canada on April 1st, 1993. Bethany was born as normal as her brothers and sisters and her early life saw steady development, obtaining the usual milestones. Bethany’s only difficulty seemed to be her late progression in walking. She demonstrated a difficulty with balance. This problem was investigated in London and in Toronto and on August 12th, 1995 after an exhaustive eight months of tests this little 2 ½-year-old was diagnosed with a terrible disease – Metachromatic Leukodystrophy (MLD). On the day of her diagnosis, Bethany was very much an active little child and was playing with Lego blocks while her medical team explained the dreadful prognosis.
Stunned by this revelation the McIntyre’s searched for answers and hope for their child only to be told that the medical community had nothing to offer. One comment from a veteran Doctor in the room that afternoon that they will never forget was – “why bother” …. after committing their family to fight for research for Bethany. This became the rallying point for the McIntyre’s and their friends.
Bethany’s journey saw her hospitalized several times as this terrible disease relentlessly stole her abilities one at a time. Due to the loss of her ability to swallow only five months following her diagnosis, Bethany was operated on for a Gastrostomy and subsequently fed a special formula via a G-tube. Her medical needs increased very rapidly as she lost her ability to sit or move on her own. In late 1996 this terrible disease stole Bethany’s speech with her last words being the “Lion King”. This was her favorite movie and seemed to take her to a special place where she enjoyed some comfort from the pain of the day. Bethany’s next crisis came in early 1997 when she was unable to clear her lungs on her own which caused her to choke a number of times each day. In February she was operated for and fitted with a Tracheotomy. This procedure gave this little girl great relief and peace dramatically increasing her day to day quality of life. The progression of her illness slowed, however, she continued to lose all of her other abilities, tragically losing her eyesight in 1999. Under twenty-four-hour Nursing care, Bethany received a very pro-active care plan that included a rigorous chest physio program, physical therapy as well as mental stimulation.
Sadly enough all the best care and love could not prevent the constant bouts of pneumonia that accompany diseases such as MLD. On July 17th, 2000 after a courageous, dignified five-year struggle with this terrible disease, Bethany slipped away in her parents’ arms surrounded in love and peace; in the same hospital, she was born just seven years, three months and sixteen days prior.
Bethany’s struggle has ended however her legacy of hope endures and continues to inspire a community of men and women to find the answers to eliminate this wretched disease thru research. On November 5th 1999, Bethany, her family and all her friends opened “Bethanys Hope Leukodystrophy Research Laboratory” under the Direction of Dr. Tony Rupar of Western University, London, ON, Canada. While funding this ever-expanding research program has been the primary focus for the past 20 years being a small part of the LCN and the Hunter’s Hope Team has been such a rewarding experience. So many talented Moms and Dads from across North America guided by Hunter’s family already making such a huge difference in so many young lives! Bethany’s day to day struggle with MLD would have been so much easier if she would have been a part of a dedicated Leukodystrophy Care Centre. We all look forward to the day when Hunter’s Hope and Bethany’s Hope Foundation open the first LCC in Canada to help the Leukodystrophy families in this country!