Every town has their community heroes, and we are thankful to the companies, business, service clubs, churches and other organizations who give both funds and their time to help individuals, groups, and clubs in a wide variety of ways and make our communities stronger.
Some you rarely hear about do extraordinary things. It has been wonderful learning about our silent heroes and now I have another! This couple – Mike and Debbie Gouin – has been giving their time, effort and compassion to assist with fundraising for a Canada-wide need to help about 12 children with Batten disease. Not a lot of kids because they seldom live to be teenagers.
A Batten disease fact sheet identifies Batten’s as “the common name for a broad class of rare, fatal, inherited disorders of the nervous system.”
Children suffer, “vision loss, seizures, delay and loss of skills, personality, behaviour changes, clumsiness, learning difficulties, poor concentration, confusion, anxiety, difficulty sleeping, involuntary movements, and slow movement. Gradually worsening seizures, loss of language, speech, intellectual abilities (dementia), and motor skills. Eventually, they will become blind, wheelchair bound, bedridden, unable to communicate, and lose all cognitive functions.”
Learn more at ninds.nih.gov.
There is no cure for these disorders but there is a treatment that will slow the disease down and relieve symptoms, while parents pray for the research to find the cure.
The big difficulty is getting it diagnosed. The challenge is to slow or regress the disease – the brain drip procedure can be started, but the family must agree to pay $250,000 back to OHIP.
If you have questions and want to understand what the children and families go through, search cureforclaire.com (or Cure for Claire on Facebook). You will meet the most amazing family with the even bigger challenge of having their second child Josef also diagnosed.
Silent heroes Mike and Debbie Gouin, assisted by their children and grandchildren living in Tillsonburg, have been devoted to assisting families with this financial nightmare. In between individual family’s needs, the funds raised are given for researching the cure. They have done everything from draws and events with live entertainment and the collection of beer cans and liquor bottles. In 2018, $12,095 was donated to the bdsra.org for research and last year the Gouins raised $8,000 to help Claire’s family. Although not in our area, Claire’s family lives in Ontario and could use your help.
You personally, or your church, group, club, family, neighbours or business can help, it is not hard. All you can do at the moment is save your own liquor and beer bottles (including wine and coolers) or pick them up while out walking. Perhaps you could save Mike some time and effort by rinsing and getting the dirt off. Mike will pick your bottles or you can deliver to him. For more information and setting up COVID protocols call 519-842-7842 or 226-970-1366.
Thank you to those helping.