I would like to start off by saying thank you for taking the time to read this story.

Michael turned three in December, and now we are into the terrible two's, but I would have to say that he is a pretty good two year old. He has found a new love for coloring and finger painting, it gives me such pride to see my son in his stander (a piece of equipment that gives him support to stand) coloring. When he is done coloring I hang in on the wall and say "what a beautiful picture" and he looks at me with this huge smile and he is so proud of himself. It amazes me that a 2 year old boy can have so much determination and drive to succeed in life, it just makes me realize that if he can do it so can I. I never thought that you could learn some much from a child, but everyday when I look at him he teaches me about life and love in ways that I ever thought was possible. When he smiles at me it just melts my heart, I cherish every smile everyday, and I am thankful that he can smile at me. I have definitely learned to recognize the good things in life and not to dwell on the bad.

A Special Thank You

This is a little story I think everyone should know about.

A couple months ago I was approached by a friend of ours daughter (Lauren), she wanted to tell me that her 12^th birthday was coming up and instead of getting gifts from all her friends and family she asked them to make a donation to Michael’s fund at Sick Kids. As you could well imagine I was blown away, I could not believe that a 12 year old would give up her presents to help my son.  I asked her “are you sure that you want to do this” and she simply replied “I have everything I need”.  She is truly an amazing girl, and I will never forget what she has done for Michael.

So this is a special thank you to Lauren for her $275.00 donation to research for LND, and a thank you to her parents for raising an amazing little girl with a big heart.

Daily Living

The average parents days are filled by taking their children to the play ground or play groups. Ours are filled with doctor's appointment, blood work, urine testing, Physio and Occupational Therapy, but we have now adjusted our life's to make that work, it will always be a part of Michael life so it has just become a normal thing to us and is a part of our everyday life. We try to make every appointment fun for Michael, and with his personality it is not very hard to that. The way that I look at it is "thank god that there is doctors and Physio and Occupational therapist that can work with my son," if it wasn't for them he wouldn't be where he is today. We now have a pretty good team of doctors that work with Michael, they are very compassionate to Michael and myself.

One of the biggest things that Peter and I struggle with now is Michael's frustration levels, and trying to find toys or activities that he can do physically but also stimulate him mentally without frustrating him. One of his favorite things to do is read books, he will sit on my lab for 2 hours and read stories with me.

Now that Michael is getting bigger we are upgrading a lot of his equipment, I am in the process of getting him a new chair, and bath seat, we have recently bought him a new "big boy" bed that he loves. Other challenges that we are facing are the sleepless nights, introducing new workers through the government, and extreme separation anxiety. But what parent doesn't have challenges with their children, maybe the challenges we face are different but you deal with them and move on to the best of your ability, and having a child like Michael makes every little challenge worth it.

Meeting Dr. Nyhan

Since last year we have been down to San Diego to see Dr. Nyhan (one of the founders of the disease) twice.

He is an outstanding man, with the biggest heart, when you talk to him he has this calming feeling about him, he makes you feel that everything is going to be okay. Our first visit to San Diego consist of blood work, two 12hr urine test and a skin biopsy, the second visit consist of just urine and blood work. We also get the chance to sit down with Dr. Nyhan at every visit and talk with him about our fears and questions. It is amazing how much you can lean in one hour. At home we are in contact with him on a regular bases, when ever we have a question, we can either pick up the phone, or send him an email, and he will respond within a week if not quicker. It is nice to know that there is someone out there that knows and cares about LND, and the children it affects.

back to top