In 2005 19-year-old Michelle Keleher married 24-year-old Will Barrett. A young couple from Guelph, Ontario, they were young and in love, and excited for their future.
“Liam was our honeymoon baby, he was born 9 months after we were married, in July 2006,” said Michelle Barrett.
When Liam was born he had extra digits on his hands and feet, called Polydactyly.
“This was definitely a red flag, but other than the extra digits, he didn’t exhibit many other signs of any disorders.”
By 2-years-old Liam was officially diagnosed with a rare genetic disorder called Bardet–Biedl syndrome (BBS).
“I was three-months pregnant with our daughter Kaitlyn at the time,” said Michelle. When Kaitlyn was born she also had Polydactyly and larger than normal kidneys. She was also diagnosed with BBS."
This rare disorder affects 1 in 140,000 births. In comparison, Down syndrome occurs in approximately 1 in 1,000 births. Not much is known about BBS, as research is just beginning on the syndrome.
Most children diagnosed with BBS have some common characteristics, from Polydactyly, obesity, vision loss, kidney abnormalities, developmental delays, dental problems and sometimes renal failure.
“Other than our own two children, we have never personally met anyone with BBS,” said Will Barrett. “Although there are higher instances in Newfoundland and Kuwait.”
Both parents must carry the BBS gene.
Both Will and Michelle carry the gene, and the odds are 1 in 4 that their child would have BBS.
Liam has also been diagnosed with autism, and Kaitlyn has been diagnosed with a seizure disorder and mild intellectual disability. “None of the additional diagnoses have been linked to BBS at this time,” said Michelle.
In September 2010, Michelle gave birth to her third child, at 21 ½ weeks. Angela lived for half an hour. Although Angela lived for a short time, she continues to live in the hearts of the four Barrett family members, and a conversation about their youngest child is one that brings happy smiles and tears at the same time.
“To our knowledge, Angela did not have BBS,” explained Michelle. “Each of my children’s lives has been a gift. Angela not having BBS does not make her loss any more or less difficult.”
The Barrett family has faced unspeakable grief over the last ten years, but their resolve and courage remains.
A typical week for the Barrett family includes a couple of appointments and therapies, as well as time spent at their local school working with specialists and teachers. Each year their children undergo routine tests, check-ups, and scans, and each year the Barrett family anxiously awaits the results.
“I sometimes take days off to attend appointments. At the beginning of the diagnosis, we were constantly attending appointments, but now we have more of a routine,” said Will.
Michelle currently does not work outside of the home. “Having a career is difficult. I’m constantly on-call,” explained Michelle.
The Barrett family is certainly a special family, but they are not that different from the typical family either.
“We have a different set of challenges, but we really have nothing else to compare it to,” said Michelle. “I’m the same as any other mother, sometimes I just have to do things a bit differently. I’m still going to get groceries, enjoying hockey games, spending time with my family.”
As parents to children with special needs, Michelle and Will are constantly advocating for effective care and treatment for their children.
Liam has recently started using a vision cane; his day-time vision has begun to deteriorate, and will eventually lead to tunnel vision, and complete loss of night-vision.
Due to the unique challenges that Liam and Kaitlyn face, the children have learned to appreciate simple moments, and enjoy adventures and travel as a family.
“Because of Liam’s vision loss, and the possibility that it could happen to Kaitlyn too, both of my kids have bucket lists. Most of it involves travelling. Last summer we went to New York to see the Statue of Liberty for Liam. Both kids love art and being creative, so we visit art galleries and children's museums. Then there's the everyday things such as watching new movies, playing the latest video game and enjoying the things we tend to take for granted like a rainbow,” said Michelle.
Support is important for any young family, but it’s especially important for a family experiencing special needs.
“We have a lot of support from family, friends, and our church,” said Michelle.
Both children play for the Guelph Giants, a hockey club for athletes with special needs. “Every Saturday at 8 a.m. our family is on the ice. The coaches, athletes, and parents have been amazing, we have been involved for three years so far,” said Will.
Both parents believe that being out in public, most people they pass by are well-meaning, but often don’t know what to say when they encounter a visible disability.
“Always show compassion," said Will. "Sometimes a simple smile is all a mom or dad needs to feel encouraged. And never jump to conclusions about a family, always assume the best in people."
If a young child is curious, never try and shush them or pull them away from a situation. Typically a family with special needs children are more than willing to have a friendly conversation with a curious child.
“Our goals in life have changed. We have experienced special challenges, but there have been many added rewards,” said Michelle.
When asked about the future, Will smiles, and there’s a flash of excitement. “Tesla and Einstein had mild autism, and look at the brilliant minds that they had. It takes all kinds of minds to move this world. I cannot wait to see what my children do with their bright futures,” said Will.
After a decade of marriage, Michelle and Will Barrett have faced challenges with their family that many will not face in a life-time. Regardless of the challenges that the Barrett family has faced, they have remained a connected family that is excited for the future, and eager to discover their next adventure.
