“Why Us”? The words from the mouths of parents everywhere who learn that their child is born with an affliction.
Anger, bewilderment, grief, because we thought the worst, an overwhelming feeling of “what did we do to deserve this” The truth is nothing. We feared the worst. We looked at the websites and read about the diagnosis, we thought “no one deserves this”, least of all us, we are good people, we are selfless and helpful and caring. However, it doesn’t matter how much you pray (to whatever god) that the diagnosis was wrong, this disease does not differentiate.
These children command an amazing presence in the face of an adversity that would make ‘normal’ people give up and crumble. Their sheer determination, joyfulness and ability to laugh and smile even though they face an unknown future that may come with persecution, terrifying hardships and possible tragedy is testament to the innocence of children and their ability to ‘get on with it’.
Finlay Arran Mair was born on the 29th December 2009. Our beautiful boy was perfect. He reached all his milestones quickly and became our reason for being.
But over a short period of time we noticed a slight difference in his walk, a wide gait. He was always falling and then struggling to climb, signs that were not there before. We took him to see a paediatrician who referred us to a Neurologist, who confirmed from a blood test that our precious, beautiful, caring son had Spinal Muscular Atrophy Type 3. Finlay walked, crawled, sat up and supported himself. Imagine watching this amazing little man slowly deteriorate in front your eyes and knowing we are altogether helpless to give him a normal life.
Finlay went from walking unaided, to walking in a frame to now not walking, all in a space of three years. He relies heavily upon his various wheelchairs, standing frame and gyro to get around. Finlay attends weekly Hippotherapy (physiotherapy on a horse), regular swimming in his Nana and Grandads heated pool, a barrage of appointments with his team of specialists from Neurologists, Respiratory doctors, Dietitians to most recently a Stoma Nurse.
At times he has trouble eating and swallowing and will this year have a feeding tube put in to help with the ease of eating especially when he comes down with a stomach bug or chest infection. Respiratory infections are becoming more frequent and as the years go on we find ourselves attending more doctor’s appointments for this reason.
We have regular visits from his physiotherapist and occupational therapist, learning how to do pats on his chest when he has phlegm, to do stretches to prevent his legs from seizing up or showing Finlay ways to have some sort of independence within our home. Finlay relies heavily on the support of us, his parents, to toilet, shower and help him manoeuvre his way around this world. At school he has the help of a support teacher to make sure he is supported in a safe environment.
On top of all of his medical costs, is the cost of equipment needed to help Finlay manoeuvre in his day to day life, medical equipment that does not come cheap. Power drive Wheelchair, manual wheelchair (in case the power drive wheelchair brakes down), beach wheelchair for us to get out and about, shower chair, walking frame, standing frame, a wheelchair friendly house, a converted car to transport Finlay to school and within the community and soon we will require a hoist for moving Finlay to and from the bathroom to his bedroom.
Despite some obvious limitations, Finlay is a bright, happy and loving boy who leads an amazing life. He still surprises people with his determination to overcome obstacles that are not there for other children. Our son inspires those around him and leaves lasting impressions upon everyone he meets. He is a typical 7 year old, cheeky mischievous and already discussing parenthood/marriage and driving a car when he is older.
Finlay is an older brother to our other son Connor and as their relationship grows, so does their love for each other. For all the amazing heartfelt, loving attributes our son has, all of his toothless smiles and laughter, hide the darker side of daily life. Finlay and Connor have an unbreakable bond however, our youngest son Connor is too young to understand that his big brother has to crawl beside him instead of walk, he can’t climb on a climbing frame or even get on a swing unaided and we are staring at the inevitability that Finlay will become weaker, thus be less able to do basic things we take for granted.
Like all parents with children who are ‘different’, how can you deal with telling them you can’t go to certain places because they don’t cater for wheelchairs, that they can’t participate in something their friends are doing because it’s impossible or just not feasible or safe. How do you answer your own son, when he says to you “I wish I could walk again”.
To us, the number (Type 1,2,3) does not matter. Spinal Muscular Atrophy is what it is. As parents of a child with this horrid disease, we hope that ALL types of SMA can be treated or cured or even prevented even if it doesn’t happen in our lifetime or our sons. There are countless lives that can be saved and made better, children, adults and families alike who deserved a chance at living a greater life.
Only through the approval of drugs like Spinraza or greater access to clinical trials or information regarding future treatments, could we begin to establish a greater quality of life. If it takes one person to make a difference, imagine what would happen if thousands believed in the same thing.