Dylan was born in August of 2014, 5 weeks early. He resides with me, his Mother, and has a loving 10 year old Brother named Jacob.
Dylan's journey goes like this...
I noticed very early on that Dylan only slept on the left side of his head. As early as six weeks old I saw a flat spot developing on that same side. I also noticed when bathing him and while interacting with him, that he never turned to the right to face me. I brought this up to his Dr but was told everything was fine. Over the next two months the flat spot got worse and worse. I bought mobiles for his crib, I put a mirror outside of it to encourage him to turn his head that way and I also tried rotating his sleep position to different ends of the crib each night. He rarely went in a swing, I limited car seat time to car rides, but nothing seemed to help. Again, I was told by the drs that it would resolve on it's own.
Finally, at 4 months old I begged his Dr for a referral to the head shape clinic. I called to make an appt but could not get in until the following February. (2 months later).
Suspecting something more was going on, I researched Physiotherapists for children. This is when I found Lizz, at Summerside Physiotherapy Clinic here in Edmonton. She is a physiotherapist that works with babies experiencing this condition (and other conditions). I wish this was suggested to me either by my Dr or the Head Shape Clinic when I called to book my appointment. I believe they should be doing more in the way of prevention if the government is just going to turn their backs on these babies. AB health care will pay for 3 visits to a physiotherapist if you're baby is suffering from a condition such as my sons.
During my first visit I was told that Dylan had Torticollis. Torticollis means "twisted neck." His head has a tilt to one side, which is a sign that he has a problem with his neck muscles. This tightness might have developed because of the way he was positioned in the uterus (with the head tilted to one side) or because the muscles were damaged during delivery.
Through physiotherapy I learned stretches to do on his neck and I also learned neck strengthening exercises. It has helped improve his mobility quite a bit. I do feel though that there was so much damage done to his skull by this point that it is uncomfortable and maybe not even possible for him to lay any other way... As a result the flat spot continues to get worse. His facial features are changing as a result of this and his ears are shifting out of place.
On February 2nd, 2015 we finally had our appointment at the head shape clinic. I obtained a prescription for the helmet but learned there was absolutely no funding for it. As of 2011, the Alberta Government no longer covers these helmets. They refer to them as being "cosmetic." I was told some third party insurance companies will cover them but my children are on the Alberta Health Benefit for parents with low income, and they do not cover it. I also called Alberta Aids forcDaily Living, and they do not cover it.
I am a proud woman. I'll admit to you it is very hard for me to sit down and write this out. I'm doing this for my boy. He deserves to be able to hold his head high when he gets older and not grow up ashamed because of a disfigurement that's completely treatable.
I urge the government to look at the position they are putting people in. The message I am getting is if I can't afford the cost of the helmet then my child will just have to suffer for the rest of his life. It's absolutely horrendous that I have to appeal to the public to help me but I will do anything for my children.
I thank you from the bottom of my heart for reading this. If you could help us in any way I would be forever grateful. I will take this opportunity to raise awareness about this condition and hopefully this will help at least one other family from not having to go through this.
The cost of the helmet is $2500.00. Dylan will need physio for the 4 month duration that he wears the helmet as well, at the very least. This website takes 7.9% of the total money raised. If there happens to be anything left over, it will be put directly into an Education Savings Bond/Acct for Dylan.
Please follow us for updates at Baby D's Helmet Update Page on Facebook.
Blessings... Baby Dylan and family.
- Dean & Eugenie Hickman
- Nikki Butler And friends
- RusselMetals TomFloyd
- Barbara E
- Mikaul and Marianne Maygard
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