Financial assistance for Child suffering from a rare disease with no name ... Chromosome 1q43q44

by Marilyne Picard
(Montreal, Quebec, Canada)

Last Tuesday, at 4:47 p.m, I resuscitated my 2 year old daughter in the living room next to her 4 year old brother. I felt powerless against the disease that`s been so hard on her. Today, I feel even more powerless because the government refuses to do more to help us.

Nobody can predict having a child that is sick and disabled. Nobody thinks of things like that. And when it happens right in front of our faces, we find ourselves stuck in this intensely difficult situation. Overnight, hospitalizations pile up. Ambulance bills ($217.75) arrive monthly. Drugs are always added one after the other ($120/month). And the thought that your child may die at any moment takes over and won’t let go. This over and above the car we needed to buy to go to her multiple rehabilitation and monitoring appointments ($275/month for gas, lease payments, registration, etc.), special products that we need to buy (special milk, thickener $245/month) and therapies that are supposed to help my child’s progression ($475/month).

And all this with only one salary since my 2 year old daughter is too fragile to go to a daycare. A simple virus can lead to her need of an ambulance, hospitalization for at least five days, a family scrambling to cover all their bases, additional expenses, etc. What employer would have the patience to hire an employee who’s absent so often? However, before my daughter, I had a really nice job ...that I loved. I studied a long time to get to where I was, and I now I can’t do what I loved so dearly.

Don’t get me wrong, I love my daughter, I love being at home with her and taking care of her the best that I can. But who, overnight could support their family and young children on one salary? Honestly? ... Some people can, but most of the time it’s their choice, but for us, it’s not a choice. We’re caught in this situation.

The Government is aware that we, the members of a family with a disabled child are struggling, exhausted, breathless. Even so, they don’t do much to help us. There are some services in place but they can’t be accessed due to lack of funding. We can not be recognized as caregivers because it is our
child that we caring for...

I can tell you that preparing my daughter’s special diet, putting her feeding tube in, pumping her secretions night after night, getting up non-stop to check her temperature and collect her vomit, doing all her physio- ergo -ortho exercises and performing cardiac massages has nothing to do with my role as a MOM ... a mom and dad should never have to handle it all.

My daughter costs an average of $1,332 per month more than a normal child. And the Government currently provides $400 per month and some rental equipment.

There are many things wrong with the Government. I get it.

What I would like, and what many parents in my situation would like, is to be recognized by the Government as an “invalid” in order to be able to take care of our children at home.

At Ste –Justine Hospital in Montreal, a day of hospitalization costs the Government about $3,000. At home, I do the same work as one nurse, one therapist, one caregiver etc.

I would like to move mountains to be heard by the Government. I intend to. I organized a meeting between the parents at wits end like me, and many were discouraged. We all get stuck in our little house trying to survive. We are exhausted; we have no more energy to fight.

I would like your help please. If you know of any people that can help us, I would like to meet them. If you have any power somewhere in the Government, I would love to talk to you. I'm tired of being alone to fight this problem that has existed for many years. The Government is aware of the situation and does nothing to help us more ... Our children will not likely pay taxes later, but is that a reason to be considered as a waste for society? Is this what we have become... a society that does not care for our fragile children? Modern medicine has gone a long way in order to help them live as long as possible, but the Government doesn’t follow.

Who would let her child deteriorate without doing anything? ... Who would leave things as they are?

Not me.

Out of respect for my daughter who fights every day.

Marilyne, mother of Dylane Mercier

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