Thank you

Hi, I am Melanie, Hailey’s mom.  It has taken me a while to be able to do this, but I have finally decided that I would like to start updating this site daily or every couple of days with a few notes about how Hailey is doing.  I know that Hailey and her story has touched many lives and the support and love we have received back has meant so much to us.  It truly has made us feel a little better and less alone in such a difficult situation.  In turn I want to share a bit of Hailey’s life with you all.

Now, where to start…maybe a little background.  Hailey is an amazing little girl.  She has made a huge impact on our lives since the day we found out we were pregnant.  Up until a little over a year ago, she was just like most other little girls.  She was in grade one, had lots of friends, was learning to write, read and to do math.  She was feisty, stubborn and had a ton of personality.  Little by little over the year, little things were changing.  At home she was having more tantrums, she wouldn’t listen, she was showing jealousy towards her brother, fighting going to bed at night.   At school she was writing less and not progressing as much in her reading and writing, bothering the other kids etc.  We started getting more and more correspondence from her teacher.  She started having accidents after being potty trained for years.  We took her to the doctor and like us, he thought it was all normal behaviour, a stage that she would grow out of.  Little did we know how wrong we were.  Over the summer we worked really hard with her trying to get her to overcome her behaviour issues, but we continued to get correspondence from camp councillors about her being slower physically than the rest of the kids and often needing reminders to dress herself etc.  Although frustrating, none of these thing were really abnormal.

Towards the end of the summer she began walking flat footed.  We made an appointment with the doctor again.  While we waited we worked with her on correcting it.  Not knowing if it was still a behaviour issue.  The next few weeks were unbearable.  She had blood tests which showed no issues and finally an MRI.  The results of the MRI were worse than anything we had imagined.  A terminal disease that we had never heard of.  There was no treatment available for children that showed symptoms and there was a 25 % chance that our son had it too.  I had to keep the name of it written down on a piece of paper in my pocket because I couldn’t remember it.

The months that have followed have been a whirlwind.  We have seen tremendous support from our friends, family, community and an amazing medical team.  We’ve tried to live life to the fullest, we’ve cried harder than we’ve ever cried and laughed harder than we have ever laughed.  There are some days that seem like we don’t know how we will ever be able to make it through the day and there are many others where we realize that we must be the luckiest people on earth to be blessed with having such amazing kids.

We are at a place in life that we couldn’t have imagined we’d be in a million years.  Day by day and with the help of all of you we are making it through.  We are fighting this disease with everything we’ve got and will not give up hope that a cure will be found that will save our girl.

Filed under: Hailey's Mom
April 11, 2013 at 9:14 pm
Posted by: melanie