Barbara Insley adopted her daughter Makeda at six months of age from Ethiopia with the same hopes any parent has - to offer the best life possible for their child.
Makeda brought joy and love to her new extended family, but pretty quickly it became apparent things were not quite right. She learned to walk and talk late and never developed the co-ordination or strength to easily use the playground equipment. She was diagnosed with catch-alls like Developmental Coordination Disorder, learning disabilities and ADHD, but none of that seemed to quite fit. As time went on, unable to understand the rules of childhood games, she had difficulty playing with her peers. She preferred to spend her time with adults as she struggled to develop friendships with children her age.
Fortunately, Makeda had a huge support network and Barbara had the resources to provide access to multiple therapists as she pursued a definitive diagnosis. But after an MRI in 2012, it was clear this wasn’t just a case of developmental delay. Genetic testing was commenced, and after many false starts, 2019 brought any parents' worst nightmare: the young girl we had all grown to love so much had Aspartylglucosaminuria, AGU, a rare, fatal, genetic neuro-degenerative disease; a disease so rare that Makeda is the only child in Canada currently diagnosed with it. AGU is a cruel disease, as Makeda will appear to make positive strides, until she slowly begins to deteriorate, losing speech, intellect, mobility, and eventually, her life.
Fortunately, we have great hope for Makeda, as a clinical trial for a gene therapy is being developed in the United States which should be the cure for her and the approximately 150 other kids around the world with the same disease. This clinical trial can start in 2021, but only with your help.
A small group of parents from around the world is working together to raise this money. Around US$2 million is still needed to fund the clinical trial and we are hoping to raise at least $500,000 of that in Canada. We are hoping to use this forum to increase awareness and get us started towards our $500,000 goal.
Will you be the miracle Makeda needs? Makeda's mom and several dedicated friends have set up a charity to support Makeda and improve awareness of AGU, which is often misdiagnosed as autism or ADHD.
You can donate here or, if you would like a tax receipt you can go to www.RareTraitHope.ca (a registered charity) to donate and learn more about this disease and the gene therapy that can save these kids' lives.
Give Makeda a fighting chance.
- Kelsey Kronstad
- Shahina Sharp
- Melkamu Samuel
- Stephanie Watt
Fundraising team (4)
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