Silver Lining
Duchenne (DMD) has forced me to look at the silver lining amongst the clouds of the dark night for over 12 years now. And I must say has been both the worst and the best thing that has ever happened to me. Facing the probable outcome of early passing of my son while still holding onto despite hope has taken more, strength, love and courage I have ever known existed within me. We have had articles written about our journey with DMD, have appeared numerous times on television, Luke was the Poster Child for the Alaska Chapter of Muscular Dystrophy for 2 years, he has helped raised thousands of dollars for the cure, Full time wheelchair usage by age 11, he is on his 3rd one now!, Been given trips to Disney World, has had a "9 hour" spinal fusion surgery and heal cord lengthening surgery. Luke was given a Lap top computer by Excel Physical Therapy. UPS store granted him an extra hospital bed for dads house. Has an incredible step dad, step mother, sisters, brothers and extended family and has had thousands of angels in the shape of friends, family, teachers, strangers and personal care attendant's who have all graced us with their, love support and compassion the entire way. Bless you ALL !! You know who you are. But the best part is LUKE. He is the strongest person I know. He faces life with gentle love and eagerness that blows my mind, brings many a smile to my heart, tears on my cheeks and the music of laughter to my ears. Luke you are my hero. I love you son!
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I just joined the Duchenne Parent Helpline and Facebook page this afternoon. I am so thankful and grateful for parents like you that have energy and strength to inspire me. I'm really looking forward to reading more of your blogs and learning more from your journey. My son, Joseph, just turned 13. We were introduced to the horrible word, Duchenne, 7 years ago. It feels like it was just yesterday, but I'm always amazed how time has flown and how much things have changed since then. My husband and I haven't really reached out much since the diagnosis, but I now feel like it's time to surround ourselves with parents that understand what we feel and go through on a day-to-day basis. I've met a lot of people on Facebook who, just like you are doing so much to work towards getting rid of this disease...it's very inspiring!
Thanks!
Christina
Jackie
have not heard of Craigs list, but will check it out. Thank you.
alicia
Keep us posted.
Char
I am at my son's right now looking at the PPMD site with him -this is so cool seeing the other individuals with the same, I think it puts a lot of meanimg to not feeling alone in that there are others "out there". Your photos are incredible Curt was amazed at your son on the big machine. He loves to go to see the off road races.
I have a son who is 51/2 yrs old with DMD. We adopted him from birth. I know birth mom is from Alaska - I think a town called Glenallen. Is that any where near you? The birth grandmother says that they don't have DMD in family history. Dr. Falligan @ Utah Uni. says that one way to know about progression is to know about family members. Just wondering if you would know about the small town of Glenallen and an individual by the name of Tami Jendra or Karen Lukkonnen. Char Burke - email charlatte2@comcast.net
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