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Since being diagnosised with Duchenne Muscular Dystrophy at the age of 4 yrs. old, Adam MacDonald now age 26 continues his Fight Against DMD!

Posted Aug. 12, 2012, at 3:59 a.m.
Last modified Aug. 14, 2012, at 12:19 a.m.

Adam has been in the limelight ever since he was born 3 months early, unexpectantly at home while living at RAF Lakenheath, England where his biological dad was stationed with the USAF.

Adam weighing only 2lbs. 14ozs. at birth spent time in the Wroxham Baby Intensive Ward in the Norwich Norfolk Hospital. At 9 days old he underwent Ductus-Arteriosus Closure surgery, closure of an abnormal opening in the ductus arteriosus, a blood vessel between the heart’s aorta and the pulmonary artery that usually closes in the first few days of life.

The Ward had received new incubators while Adam was still a patient and he was the first baby to be placed in one. Their local paper did a story about the new equipment, and ran a story – American Baby Boy benefiting from the new incubators.

After his dad’s 3 yr. tour was up at RAF Lakenheath,he received orders to be stationed at Myrtle Beach AFB, SC.

When Adam was 4 yrs. old he was diagnosised with having Duchenne Muscular Dystrophy ( this is the time I ask others to please research Duchenne, read about it, learn about it and do something about ). At first him not walking till age 21 months was attributed to being a preemie. We have no known history of Duchenne MD in my family. Duchenne is genetically passed on to boys with a defective gene from their mothers. It can also be a new mutation that causes a child to be born with DMD. Duchenne can happen in any family at any time, it does not discriminate. In the past it was only known for boys to be born with Duchenne and girls to only carry the defective gene, now it is known, though very rare that girls can also be born with Duchenne.

Adam has represented MDA as a State Poster Child both in SC and here in ME and has continued being a MDA Goodwill Ambassdor over the yrs.

Duchenne is the No.#1 Genetic Killer of boys & girls across the globe, it affects 1 out of every 3,500 boys & girls. The usual age that a child loses their battle to DMD is in their teens, now thru the efforts of many over the years, research has found new ways to help these children live longer by taking steroids, heart meds., usage of Cough Assist Machines & Suction Machines, Feeding tubes, Bi-Pap at night and non-invasive breathng devices during the day and trachs when absolutely neccessary.

This year Adam will be celebrating his 27th Birthday on October 20, last year we almost lost him to 2 resp. failures after having Appendectomy Surgery. We celebrated him turning 26 with a Big Surprise Party held at The Crow’s Nest Restuarant here in Presque Isle !

This party was planned & organized for the, 3rd Adam MacDonald Birthday Wish In The Fight Against Duchenne Muscular Dystrophy. With the Annual Fundraiser Adam sets a goal to raise $100 for each year he has lived with Duchenne, this year he will be turning 27 yrs. old so, he will be trying to raise $2,700 this year in the Fight Against DMD. Each year he then selects a different organization that is in the Fight Against Duchenne to be the receipent of the funds raised thru his Birthday Wish Fundraiser. The 1st year he selected CureDuchenne, founded by John & Debra Miller who have a teenage son with DMD ( cureduchenne.org ). Adam’s efforts fell short and he raised just over $400 for CureDuchenne. His spirits became low and he became discouraged and didn’t want to try it again the following year(s). Though he did change his mind and the 2nd Annual Fundraiser was planned & organized,he once again selected CureDuchenne as the receipent to receive the funds he raise. Adam’s efforts raised almost $10,000 for CureDuchenne in the fight against Duchenne, this fundraiser has now become an annual event around Adam’s birthday month. Last year Adam raised alittle over $4,000 for ParentProjectMuscularDystrophy (www.ParentProjectMuscularDystrophy.org), founded by Pat Furlong and her family, they lost their 2 teenage sons to Duchenne. We are in the early stages of planning/organizing this years 4th Birthday Wish Fundraiser, Adam has selected Darius Weems (www.DARIUSGOESWEST.org)Know About it! to be the receipent of the funds raised this year. Darius goes into schools across the US and spreads awareness about DMD thru Rapping. Darius also traveled from his home in Georgia out west to Calif. to MTV’s Pimp My Ride to see if they would pimp out his wheelchair! This is how the “DariusGoesWest” DVD was made about their journey out west. This DVD was also made to help spread awareness about Duchenne. Learn how you will receive your FREE DVD later in this article!

We had the pleasure of meeting Darius & his crew May 29 of this year at the Erskine Academy in S. China,(you can check out footage coverage on YouTube and see Adam ). The JMG students sponsored Darius & his crew and brought them to Maine. Darius like Adam also has Duchenne, Darius lost his older brother to Duchenne.

We have a few new fundraising events coming up this month. On the weekend of Aug. 25 & 26 we will be holding our 1st Annual Yard Sale In The Fight Against Duchenne Muscular Dystrophy For Adam MacDonald, people have been donating items for us to sell. Other events taking place during the yard sale will be our 1st Annual Rubber Duckie Fundraiser To Find A Cure For Duchenne! For $1.00 kids can pick a duckie out of the pool and win a prize. Where our yard sale is happening the same weekend of the Hot Air Balloon Festival, prizes are all in the shape of a hot air balloon to help in the festival celebration. Next is our 1st Annual Returnable Can & Bottle Drive For Duchenne Muscular Dystrophy, funds will be donated in Memory of Nick Davis whose family is from Rockport, ME. We have known the Davis family when Nick was just a wee toddler being pushed in a stroller, we all met thru volunteering during a MDA Jerry Lewis Labor Day Telethon, being aired thru WABI-TV Channel 5 News out of Bangor. Each year we always watched for the Davis family to pull into the station’s parking lot. We gave up our Labor Day Weekends for 20 yrs. to answer phones, to do live interviews, etc. during the telethons, the telethon is no longer being aired out of Bangor. Nick lost his battle to Duchenne in Nov. 2009 after celebrating his 17th Birthday back on Aug. 11, 2009. Nick would of been turning 20 yrs. old today, we all miss you Nick. His mom Priscilla Davis has started a FB page, In Memory of Nickolas Davis, and each year on his birthdate she askes others to do something nice in memory of Nick. We are asking people to – WAIT! DON’T THROW that returnable can/bottle away and donate it to Adam in Memory of Nick. People can drop off their returnables at our house ( if we aren’t home you can leave them out back near the ramp – please leave your name and address on your drop offs )or if you plan on coming to our yard sale you can drop them off then, we will have containers available to put them in. The tabs from the cans will be donated to the Ronald McDonald House in Bangor where sick kids and their families need to stay at times, we have had to stay there in the past. People who don’t live locally near us to drop off any returnables, you can still support Adam by saving your returnables cashing them in and sending the amt. to Adam in the form of a check or money order. Anyone that lives in a state that doesn’t charge a deposit on cans & bottles to be returned and would like to donate in Memory of Nick can do so, by sending a donation by form of a check/money order to Adam. Another 1st started this year is our 1st Annual Kids Help Fill Puffer The Pink Piggy Bank With Pennies For The Cure Against Duchenne Muscular Dystrophy. Kids will receive a Puffer The Pig Thank You Gift when you help fill the bank ( nickels,dimes,quarters are welcomed ). Puffer The Pink Piggy Bank will be at our yard sale doing his part in the fight, he is feeling alittle empty right now so, come on by and help fill his empty belly. Kids that aren’t local and can’t come in person to help fill Puffer The Pink Piggy Bank can still support Adam by saving their pennies and have a adult help cash them in and send the amt. saved in form of a check/money order to Adam, make sure to include your name and adress so, we may send you your Puffer The Pig Thank You Gift. Thanks to Russell Stairs of Littleton who is making and donating the bank to us. Check out his other great merchandise at http://www.rustyrods.com!

There will also be a Green Ribbon Awareness Lollipop Tree present at the yard sale, for $1.00 you can purchase one of these Lollipops in the Fight Against Duchenne!

Another way we are trying to help raise funds for Darius is thru proceeds from sales of the 1st book we are co-authors in, “SavingOurSons&DaughtersII”! This book is full of inspring stories from 40 Duchenne families, that have opened their hearts up to share their stories in the efforts to help spread awareness about this devastating disease. Sadly, I have to say that still today after Adam was dx over 20 yrs. ago people still don’t know anything about Duchenne MD, they still say MS even after we have just explained to them what DMD or just what MD is. What is even more sadder is just how many medical professionals have never heard of Duchenne, but still feel they are qualified to care for our Duchenne children and won’t listen to us parents that are pretty much the experts on DMD. Many have lost their battle to Duchenne prematurly in past yrs. due to lack of knowledge by medical professionals on the proper usage of oxygen and pain meds. after they have surgery. They still want to follow the same protocol they would use on a healthy person needing surgery in regards to oxygen usage. With Duchenne teens and young adults who have progresed in the disease and their lungs have weaken, oxygen usage other than thru a Bi-Pap or trach can kill them. With strong lungs we all can breath out the Co2 after each breathe of oxygen we breath, with weaken lungs due to the progression of Duchenne, the lungs are too weaken to breath back out the Co2 after every breathe of oxygen thus leaving the Co2 in the lungs which will signal the brain to tell the lungs to stop breathing. Certain pain meds. that slow down our lung function shouldn’t be given to Duchenne pts., as they will only slow down the already weakend lungs that aren’t functioning at 100% capicity.

When the book was came out back in April of this yr., Adam offered FREE Shipping to those that live locally and he has been delivering the books to the 25 that purchased a book from him, pics have been posted on our FB Pages.

You can order your book at: http://www.mistyvanderweele.com/sosd2orderpage?ap_id=cmarkey1961 ( make sure to use this link ending with cmarkey1961 so, Adam will get credit for each book sold so, he can send proceeds from each book sold to Darius. One book has already traveled across the miles and found a home in Spokane WA. Some have purchased the book, read it then donated it to their local library or to a hospital library in their area, to help us spread awareness! Priscilla Davis had a story published in the first book, “SavingOurSons” in Memory of her Nick. She gave us one of her books and we then gave her one of our books, we drove to Rockport and surprised her with a visit. Priscilla donated one of her books to the Rockland Library, while we were down her way we also stopped by the library and donated one of our books, so, they would have both books! The book her story is in can also be ordered at the link I provided.

While supplies last, those that support Adam’s efforts will receive the “DariusGoesWest” DVD FREE! Learn how to receive your DVD FREE below:

Anyone that would like to support Adam in his Fight Against Duchenne can donate by sending a check or money order to: Adam MacDonald 17 State Street Presque Isle, Me. 04769. 1).Donate $20.00 or more 2). save and donate cans/bottles along with saving and donating the tabs off of cans 3). donate items for our yard sale!

He doesn’t only support his fight, he fights for all that have any kind of terminal illness, been in a accident that has left life altering changes, etc..

Thank you for your interest in Adam’s Fight!

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