Brandon's Story

My name is Brandon Chown and as a child I was diagnosed as being growth hormone deficient. I am originally from Toronto, Ontario and was diagnosed at The Hospital for Sick Children in June of 1993 at the age of four. I remained being treated for growth hormone deficiency until November 2004 at the age of 16.

 

I am now 25 years old and living in Kamloops, British Columbia in my final year of a Bachelor of Tourism Management degree at Thompson Rivers University.

 

As a child I was short (obviously); however I never let my size dictate who I was as person or as an athlete.

 

I played competitive hockey and soccer my whole life and always tried to view my size as an advantage rather than a disadvantage. When I was 10, I fell in love with downhill skiing and since then I have never looked back!

 

When I am not skiing or snowboarding, I am usually studying, watching hockey, hiking, skateboarding, boating or enjoying the company of friends and family. I am hoping to one day become a travel writer focusing on the ski and snowboard industry. I am looking forward to this exciting adventure and I hope you are too!

 

My name is Gayle Chown and I am the mother of the young man Brandon Chown who you met at the MAGIC meeting in Kelowna on Nov 4, 2013. I was so thrilled to get your e-mail about the Canadian chapter and that it was going to be so close to where Brandon is living. I forwarded it to him right away.

 

I was so proud that he was so enthusiastic about becoming a part of this organization and this was something that he told me he needed to do. Brandon was really pleased that you were there as we have talked about you over the years and how magic got started.The night before he went to the meeting I got my binder out so that he could get some info about his treatments, dates and anything he might need for the meeting. I read over the phone to him (we are in Toronto) the letter you had sent to the parents way back about how your son Deno was diagnosed and was now married and living a good life. The letter was dated 2001/11/20.

 

I guess Brandon filled you in about how we became supporters of Magic. A few days after he started his medication my husband was flipping through the chanels on the tv and he saw something about GHD and the Magic Foundation. I called the toll free number and spoke to you about Brandon. I will always remember that call as you were so supportive and offered so much information. I think the most important thing was that we realized that there were other parents out there that were going through the same things with regard to diagnosis and the treatments. I also remember you saying that there was a little girl in Tehran whose aunt had written to magic because she was diagnosed as GHD but they couldn't get the medication. You said that magic will always try to help whenever they can. We then became members and Brandon grew up with MAGIC.

 

Brandon was diagnosed in June 1993 and started his Humatrope on June 15, 1993. He finished his medication Nov 2004 and was followed at HSC until Oct 31, 2006. He was on Humatrope for 11 years and was 4 1/2 years when he was diagnosed. His projected height was 5feet 6 inches if treated but only 4 feet if not. There was no question as parents as to what we had to do. His height as of now is 5 feet 6 inches. He always said he wanted to be taller then me and he made it!!!When Brandon was born he was on the 25th percentile for height and by 9 months of age he was down to the 5th percentile.

 

With a nursing background my gut feeling was that there was a growth problem, I didn't know anything about this but continued on nagging his pediatrician that we should see an endocrinologist. He kept telling me that I shouldn't worry as both Brandons dad and I are short and because it is now my baby I am worrying for nothing. I worked with this pediatrician at the hospital so I knew him well. Also I think he had his own hang ups as he was very short! So we kept monitoring him until at the age of two years Brandon had to be admitted to The Hospital For Sick Children for kidney surgery for a structural blockage. The specialist had told me that this had nothing to do with his short stature.

 

So on arrival at the hospital for surgery I had told them that I wanted to be seen by endocrinology before discharge and was guaranteed this would happen. However, discharge day had come and we hadn't been assessed. I was not leaving this hospital until Brandon was seen as we now had our foot in the door and I knew that they needed the bed. I wasn't well liked but you know as well as I do there isn't anything a mom won't do for her child just like a mother bear and her cub. LOL

 

He was seen by an endocrinologist and was monitored until he was 4 years and then a bone x-ray was done which was 1 1/2 years delayed. Then the overnight diagnostic blood tests were done and the diagnosos made GHD. He started on Humatrope and actually my husband gave most of his needles. Within the first three months he responded to the Humatrope and from June until Sept he grew 1 inch and we never looked back. We were so lucky with Brandon the needles were never an issue. It was just a part of our daily life and he grew used to it.

 

We talked about you and Magic and made sure he knew there were other kids out there that were part of Magic as well. As a pre teen there was a very brief time when he decided that he wasn't sure if he wanted to continue on with the Humatrope. I must have consulted someone at Magic because I remember getting a video of a group of teens sitting around talking about their experiences and what magic meant to them. We watched it and there was never a doubt after that.


Before he was diagnosed when I knew there was something wrong, I would have people come  and ask how old my baby was and I would tell them but they would look at me like I was crazy because he looked so young and was compared to another child the same age. This was always in my face because my sisters kid was only 4 months older but always looked so more mature. Brandon had the very soft dysmorphic features, the broad nasal bridge, the extra baby fat that always looked like pitting edema.I never had to buy him new pants because he never outgrew them. Lots of little clues but no proof at that time. After he was diagnosed my pediatrician could only say " Well, I have never had a child in my practice in over 15 years that has had a growth deficiency so there must be a genetic problem.

 

It didn't take me long to get a referral to a geneticist at HSC who ruled out any syndromes, just GHD. After Brandon was responding to his growth hormone I sent him back to the pediatrician with his dad for his next annual check. I didn't step in his office again. It wasn't long after this that one of my colleagues had her child diagnosed with GHD and went to the same pediatrician.  I don't think that Brandon had any bullying over his size as he was a secure well adjusted kid who felt there was nothing wrong with him as it was the other people that had the problems if they couldn't accept him for who he was. I had one really bad episode with a mother of a kid who was in Brandons class that asked me why my kid was so different and so small. Well, this mother got a whole mouthful that I can't repeat here but until this day she will see me, look at me but doesn't dare speak to me.

 

We are so proud of Brandon who has grown up to become a great young man with dreams and goals. His dad and I are so excited that he is becoming involved with magic. He can be a great role model for the kids who are going through this now as well as a resource person to help the parents realize that growth hormone is important. However most of all Magic needs to be here in Canada. I am not great with the computer but if there is anything we can do in Toronto with you and Brandons help we are very supportive. Would love to hear from you. Thank you so much for what your organization has done for the parents and kids and will continue to do here. I hope you had all afternoon to read this e-mail.LOL  Please congratulate Crystal  for all the lobbying and work she has done to get Magic started in Canada.  I knew Brandon was close to Kelowna for a reason.

 

Take care Gayle and Mark Chown

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