In an earlier post I briefly mentioned Christina and her former autism service dog, Spencer. I’m now going to share the story of this little angel and her ongoing fight for life.
We first met Spencer (now retired), at an Autism Dog Services puppy training session in Waterloo with a 3 or 4 month old Aiden. At the time, Spencer was staying with the program trainer in order to learn what he needed to do for Christina. I remember being given a chance to walk with Spencer and thinking about how lucky this little girl, I did not yet know, was to have him in her life. He was so attentive, confident and wanting to learn.
Fast forward 9 months or so and I got a chance to meet Monique, Christina’s Mom. From the moment I met her, I knew we’d become friends and stay in touch. Monique is an amazing woman. She wants what’s best for her daughter and isn’t afraid to make things happen. When we first met she asked a lot of questions about how we could raise a puppy knowing it would someday leave us for a new family. She listened to what we said and tried to understand why we were doing this. Throughout the outing she’d come over and comment on how well-behaved Aiden was and how she’d love to trade him for Spencer – he liked to give Monique a hard time. We met Monique a few more times and began keeping in touch.
Christina is 9 years old and has Cardio-Facio-Cutaneous Syndrome, in addition to tonic/clonic epilepsy. She was originally diagnosed with Noonan’s Syndrome, but after a few years of doctors scratching their heads and finally more thorough tests it was discovered that her seizures were the one symptom which separated Noonan’s from her actual diagnosis of CFC. CFC is a rare genetic condition that usually affects the heart, facial features and skin. Children with this diagnosis may possess the following features –
• relatively large head size
• wide-spacing eyes which may cause decreased vision & acuity
• Sparse eyebrows
• Curly hair
• Areas of thickened or scaly skin
• Small stature
• Heart defect
• Varying degrees of learning difficulty & developmental delay
• Feeding/GI problems (failure to thrive)
• Varying severity of neurologic conditions (seizures, cognitive impairment, etc)
(CFC International, 2010)
Several of the above characteristics are also present in the diagnosis of Noonan’s Syndrome, so it is understandable that it took doctors time to figure out Christina’s true diagnosis of CFC.
CFC was a tough diagnosis to accept, but christina’s family is finding it even harder to deal with watching their little angel struggle to survive the numerous seizures that are taking a toll on her little body. Christina has been put on several different medications and is currently on a Ketogenic Diet in an effort to provide some relief, but nothing seems to work. Recently, they were informed of a life-saving alternative, the Vagus Nerve Stimulator, but their excitement was short-lived because they were informed that Toronto’s Sick Children’s Hospital is only able to perform 8-10 procedures a year. This is not because they don’t want to do more, but because OHIP doesn’t cover the units and the money must be taken out of the Hospital’s own surgery budget. This news does not sit well with Christina’s Mom, so she has taken it upon herself to begin writing letters to Ontario’s Minister of Health, hoping something can be done to rectify the situation. It’s hard to understand why a life saving surgery wouldn’t be covered, but something like a Gastro Bipass would be approved without a second thought. I’m not saying the Gastro Bipass isn’t important for some people to live a long and productive life, but the VNS is often the last chance these children have for a life at all.
Christina may not be like other children, but she is just as entitled to living a long and happy life with her friends and family. She has had to climb an uphill battle since a very young age and could teach us so much about what it really means to live. She may not be able to get around on her own. She may not be able to enjoy a home cooked meal like the rest of us. And she may not have any formal method of communication, but she has feelings and she knows what’s going on around her.
I know there’s not much I can do for Christina, but I’m hoping that by sharing her story and letting everyone know about the struggles she must overcome each day, maybe someone will stumble across my little place on the worldwide web and start bringing about change. There are so many children out there like Christina, but as of today they’re no longer alone in their fight for life because they have Monique on their side. Christina’s Mom is a strong woman and I know that she will never give up on her daughter because she believes, just as I do, that everyone deserves a chance at life. If you’d like to join us in writing letters to the Ontario Minister of Health, please leave your e-mail address in the comments section and Monique or I will contact you with the details.
I’ll finish this entry with a poem I found on the following website – http://www.child-autism-parent-cafe.com/index.html – I hope the author doesn’t mind me re-posting it here…
The Misunderstood child
by Chelsea-Louise Perry
I am the child that looks healthy and fine
I was born with ten fingers and toes
But something is different somewhere in my mind
And what that is nobody knows.
I am the child that struggles at school
Though they tell me I’m perfectly smart
They tell me I’m lazy, can learn if I try
But I don’t seem to know where to start.
I am the child that won’t wear the clothes
Which hurt me or bother me too much
I dread sudden noises,
Can’t handle smells and tastes,
There are few foods that I will eat.
I am the child with a broken heart
Though I act like it don’t hurt inside
For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood
I am different, and I understand that too
But for me to fit in and be accepted
Is totally up to you.
Please help us advocate for Christina and children like her because if we don’t, no one will.