Living on the Edge Dylan’s Journey

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  ABOUT THE AUTHOR:   Melanie Mackie is the mother of Dylan, a young boy who was diagnosed with DMD.  She shares her journey living on the edge of an invisible, IMPLACABLe disease and how she coped with her son's inevitable fate and the aftermath of living without her sweet son.

ABOUT THE AUTHOR:  Melanie Mackie is the mother of Dylan, a young boy who was diagnosed with DMD.  She shares her journey living on the edge of an invisible, IMPLACABLe disease and how she coped with her son's inevitable fate and the aftermath of living without her sweet son.

It was a shocker to hear the Doctor tell me I was pregnant. I never planned on being a MOM at this point in my life. I was scared but at the same time I was excited. So the nine months went by and it was time to have him come into the world and be my son. The labour was intense and to this day I wonder if he knew what was to come. I say this because he did not want to come out of me. I tried . I pushed for hours. Didn’t want out. But of course the Doctor pulled him out of me , cut the cord around his neck and hoped he would start breathing. I brought him home and totally fell in love . He learned all the normal things a toddler is taught. How to eat, talk, play, walk , and even run . He was a perfect baby . A happy baby. A very cute baby.

Dylan’s third birthday came and something didn’t seem right. He was pale, constantly wanting to drink water and peeing thru his diaper A LOT. I took him to the Doctor and after some convincing to do a blood test for Diabetes the Doctor ordered one. I looked it up and read about it while waiting for the results and was hoping it was not a positive blood test. My family , Dylan, and I went out for dinner the evening the Doctor got the results. Sure enough we had to go to the hospital right away as Dylan’s blood sugar was 55. Very high and he was still alert and seemed ok. So off we went to the hospital . The nurse gave him a shot of insulin and it brought his sugar down way too fast and he started vomiting. After a week in hospital and a tonne of information in my brain we went home. This was Jan.2000 , a month after he turned 3. I have to say I really don’t know how I did it but I managed to pick this up right away and kept his sugar controlled and he started eating 6 times a day and getting needles everyday. This part he did not like for quite some time as well as the pokes to his fingers to check his sugar. This doesn’t run in my family at all and it was a big shock to us but I dealt with it because what else could I do. Now for the DMD diagnosis. Dylan got very sick with gastroenteritis (a very bad flu) and was admitted to hospital . The Doctor in the ER decided to do quite a few blood tests and one of which came back showing the liver enzymes extremely high. So at this point the Doctor thought something was wrong with his liver. We ended up going to The Hospital for Sick Children in Toronto, Ontario . Dylan had to get a liver biopsy done . This was scary for me and I didn’t like him being put under for this procedure but thankfully it was very fast. This turned out to be for nothing because it was not his liver. Dylan’s diabetes Doctor decided to ask them to do a blood test to test the muscle and sure enough they found it to be very high. September 3 2002 , one of the worst days of my life, Dylan was diagnosed with Duchenne Muscular Dystrophy . From this day on everything changed in my life but also Dylan’s life took a sharp turn in a different direction. So now after learning how to walk he was about to learn that it was going to be taken away from him . Turns out that when a child has a life threatening ,terminal, illness then a wish can be granted . Dylan wanted to go to Disneyworld and meet Mickey Mouse. Make a Wish took care of everything. We got to go in a limo , on a plane, stay in Florida at an amazing place called Give Kids the World and go to all the parks AND have some spending money. It was the best and Dylan had a great adventure. Dylan’s decline of muscle strength was a slow process for his legs and you would think this was a good thing but it wasn’t for him. He started with a walker then to a manual wheelchair and then finally having his own independence on his movements he got an electric wheelchair. He was actually very happy to get the electric chair after a few years of struggling this was his prize. I wanted to share with you all the vehicles Dylan has been in because he is proud of all of them and loves anything with wheels. His ultimate fave is the city bus(loves riding the bus), train, plane, boat, 18 wheeler, smart car, tow truck, fire truck , ambulance, taxi, limo, jeep, pickup truck, cars, accessible race car, moving truck, ferry, school bus, steam train, snowmobile, go-kart, pontoon, police car, coach bus, zoo-mobile, hay ride , riding lawn mower trailer, golf cart, ATV, mono-rail, subway, two accessible vans and a convertible.

At this time Dylan’s heart is being damaged by Duchenne. It is pumping and working so hard to keep him going. This disease is evil and I sure hope a cure can be found to help these kids not have to go thru this. He doesn’t know he is dying and I will remain positive and fight the fight as long as possible for him. He will laugh right up until the time because he is so innocent and his personality makes him shine. At this time it is very exhausting and emotional for me but it has to be done for my son. He needs me right now and I will not leave his side. I will continue to pray for a cure but I’m afraid it will be too late for my Dylan.


READ MORE OF DYLAN'S JOURNEY HERE

https://www.facebook.com/notes/for-my-son-dylan-living-on-the-edge-his-story-duchenne/inroduction-and-chapter-one-living-on-the-edgedylans-journey/10156004068448830/