When husbands Chad Farquharson, age 39, and Wayne McGill, 48, decided to adopt a baby boy, they knew that being a parent would present them with challenges.
However, they had no idea quite what lay in store when they welcomed their son, Grayson, into the world.
Farquharson and McGill are both Canadian, and are based just outside of Vancouver. They met in 1998 and married in 2001.
When they decided to start a family, they opted for adoption, arranging to take on the soon-to-be-born child of a pregnant woman who lived in a more rural part of British Columbia.
When Grayson was delivered by emergency Caesarian section on 14 January 2011, it was discovered that he had a heart defect that required urgent surgery. After surgery, his doctors discovered something else. Grayson has a very rare genetic disorder that affects approximately one in every 180,000 children: Maple Syrup Urine Disease (MSUD).
Basically, his body is unable to process proteins in a normal fashion. This can lead to a build-up of branched-chain amino acids in his body.
When some of these amino acids – specifically leucine – reach a certain level, they become toxic and cause brain damage. They also cause urine and ear wax to smell peculiarly sweet: hence the name of the disorder.
As any doctor, nutritionist or body-builder will tell you, protein is an absolutely essential component of your diet. Therefore, anyone with MSUD must eat a strictly regimented diet that contains precisely measured amounts of amino acids.
Failure to do so will result in severe brain damage and, ultimately, death.
Four days after Grayson’s birth, Farquharson and McGill faced a stark choice: back out of the adoption while they were still able to do so, or take on Grayson and accept that the fact that they would have to always monitor absolutely everything that he ate.
On top of this, the doctors were unable to tell them whether Grayson had already suffered any long-term damage because of his genetic condition.
‘All I could think about was that if we didn’t take him, no-one was going to take him, because on paper he’s a nightmare,’ says Wayne now.
The couple decided to continue with the adoption. Since that time, they have carefully measured out and weighed everything that Grayson has eaten.
‘Every single day, we work to make sure that today isn’t the day that he gets brain damage,’ says Chad.
Their diligence has paid off. Chad says that Grayson is doing great and is hitting all his developmental milestones. He is a happy three-year-old that has just started pre-school… although just the thought of sending him to school terrified the couple.
‘It terrified the school too,’ concedes Chad when he spoke to GSN. ‘It’s stressful for them, but they said yes, and it’s worked out great. He’s not, at this point, interested in other kids food, and the teachers know that if he doesn’t eat something, that’s OK.
‘It’s not on them to get him to eat it; they just can’t throw it away because he still has to eat it later. So we just give it to him on the way home or later, because he still has to eat it.
‘We need to make sure that we give him the exact amount of leucine through fruits and vegetables that we’ve been told his body will need for that 24 hours – not a milligram more not a milligram less.’
The men found great support at the BC Children’s Hospital’s branch of the Rare Disease Foundation, which is made up of hospital staff, researchers and parents of children with rare diseases. Not only does the Foundation provide support, but it also helps to raise funds for vital research.
As part of this initiative, Farquharson and McGill have recorded a video about themselves and Grayson.
‘Everybody has this sense that children are healthy unless they can visually see otherwise,’ says Chad, when I ask him why he agreed to take part in the video project.
‘What I’ve come to learn is that there is a huge community of children who look healthy but aren’t. I wanted to raise awareness for Grayson’s particular disease because if I don’t, who else will? The community really is that small.’
Chad admits that looking after Grayson’s diet is extremely challenging, but that his long terms prospects are good – provided that he always sticks to his diet. He has no regrets about becoming a parent, even though he admits that he first had to be won over to the idea.
‘Being a parent is not something I longed for. Wayne had always wanted to be a parent but I didn’t. The thing that changed my mind was something Wayne said; that having two incomes and a nice lifestyle was great, but that ten years later, having exactly the same thing, wasn’t so great – that it’s fantastic when you take on new challenges.
‘It was actually that very logical discussion that made me want to take on being a dad, and for Wayne it was just something that he always wanted.
‘Grayson, personality wise, is a rock star. It’s sometimes hard for me to take my advocacy hat off, because I always talk about the MSUD parts, but to be honest, we are a very, very typical version of what parenting looks like, of what a family looks like.
‘We have a great life. Being a dad – having nothing to do with MSUD – has completely changed our lives for the better, and, yeah, it’s fantastic.’