Cure for Cole

$5,713 of $7,500 goal

Raised by 93 people in 25 months
Mandy Terrill   SUFFOLK, VA
Hi! I’m Cole. I’m 4 years old and I have a form of Muscular Dystrophy called Duchenne. Duchenne Muscular Dystrophy is the #1 genetic killer of young children and affects one in every 3,500 boys born worldwide.  Currently there is NO cure and the disease is 100% fatal.  There are no survivors. My muscles are missing a protein called dystrophin, which supports the muscle fibers, keeping them strong.  When a normal muscle that is being exercised would get stronger, mine gets weaker.  The natural course of the progression of the disease will have me wheelchair bound by 9 – 12 years of age, experiencing heart and lung problems next by age 15 or so and generally death will follow by late teens to early 20’s.  It is an especially brutal and cruel disease.  I have to take nasty tasting steroids for life to help slow the loss of muscle strength and I also go to Physical and Occupational Therapy at CHKD each week. I just finished my 2nd year of Preschool where I received Special Education and additional Physical, Occupational, and Speech Therapy services. I wear braces to bed at night and I am slowly adjusting to the idea of having to wear braces during the day too. I get tired easily and it’s hard for me to keep up with the other kids on the playground. I face many challenges daily like needing help to get up and down steps, and running and jumping are difficult or nearly impossible in some situations. I have just started to be able to ride a tricycle although I do need an extra push here and there to help me get going. I especially enjoy riding my motorized four-wheeler. I love feeling that wind to my face!

Research has made huge progress over the last 10 years and there are now 3 drugs that are in clinical trials that are looking very promising for the Duchenne community. With the FDA considering these New Drug Applications, my family and I are hopeful that a cure may be found in time to save me. The doctors say that my generation of boys with Duchenne may be the last to die or the first to survive….. and I want to LIVE!!!

Cincinnati Children’s Hospital Medical Center has a Neuromuscular center run by Dr. Brenda Wong, who is known throughout the Duchenne community as one of the top specialists of DMD in the country. He will be seen by Neurology, Cardiology, Pulmonology, Endocrinology, Neuropsych, have Physical, Occupational, and Speech Therapy evals, Social Work, Care Management, and a Nutrition consult. He will also have multiple lab draws and radiology studies such as an EKG, Echo, DEXA Scan, and a Holter monitor for 24 hours. They will then gather all the information together and develop a treatment and care plan and adjust his medications for him, hopefully with the goal to get him into a clinical trial. As his mother, I want him to get top notch care and treatment, giving him the best chance to live. I believe Cincinnati will give him that chance. This trip is costly and we are anticipating follow up appointments every 6 months as well as his regular appointments at home in Virginia, along with the mounting medical bills, co-pays, therapy, and medical equipment costs- and that is why I am asking for help. Cole’s father passed away from suicide when he was only 8 months old. As if that wasn’t devastating enough, Cole was diagnosed with Duchenne almost exactly 2 years later. It has been a heartbreaking last few years along with financially burdensome. Any help is appreciated. I just want to give my child a full, happy life, for as long as God will let me have him!

It only takes one muscle to make a difference- your heart!
+ Read More
Update 4
12 months ago
We went to Cincinnati again a few weeks ago and Cole is maintaining, which is good news. His heart function is still good which was a relief. He remains on steroids (Deflazacort) that we get from London and the side effects have been much better on this than Prednisone.
We found out today that the local firefighters union is sending Cole and I to Disney for a week this Sunday. He is so excited! I can't wait to see his face when he meets Mickey! Thank you to everyone for your prayers and support. You all are truly a blessing to us!
Riding the fire truck
+ Read More
Update 3
25 months ago
Cincinnati day 3 done! What an exhausting 3 days this has been! Cole had thoracic and lumbar x-rays in the morning. He was a little wiggly worm, but they managed to get decent pics. He has a slight curvature of the spine (boys with DMD are prone to getting scoliosis) but will continue to monitor. Had the follow up meeting with the Neuropsych MD who recommended intensive speech therapy. He's got a lot of language/ communication execution delays that they can help with. She did give me a gold star in handling his tantrums (in telling him that I recognize he's upset & tired, but has to work through it and finish his tests; commanding him to do something shuts him right down). She also gave some tips for his upcoming IEP meeting with the public school system for this school year. The day continued on, meeting with the genetics counselor, social worker (who was actually able to help me answer a question I've been asking for the last 2 years!) & nutritionist (who was very impressed with how much milk he drinks and strawberries he eats!). He was seen by Cardiology who reviewed his test results with us and there are some mild things that will need to be closely monitored, but all in all, his heart function is in good health for now. (Yay!!!) We reviewed some final recommendations from Dr. Wong, but the best news was hearing that the drug he would need is coming up for clinical trials next year!!! The FDA is expanding eligibility criteria for these trials to children younger than 7, meaning Cole will have a chance! {cue the angels singing} Dr. Wong will notify us when a trial becomes available that she feels will be beneficial to him and that he meets eligibility for. She did say that the travel expenses for the trials may not be covered by whoever is funding the trial. Another roadblock, but when there's a will, there's a way.

Cole was a trooper through all of that, so I took him for a treat to the Cincinnati Zoo. He loved it! His favorite was the polar bear. He growled at it and told him to wake up! We met up with our other Duchenne friends for dinner and goodbyes.

I am so happy I didn't sit back and listen to the Doctor who said "Take him home & love him, there's nothing we can do". There may not be a cure at this moment, but there is treatment to help prolong his life and make it the best quality it can be. We'll be back to Cincinnati in January.

Thank you everyone for your continued support. This is a long, expensive road ahead of us. Any help is appreciated! Please continue to share Cole's story and raise awareness of Duchenne Muscular Dystrophy.
+ Read More
Update 2
25 months ago
Cincinnati Day 2 Update:
Took the 6:30am shuttle to the hospital to make sure we were first in line at the lab when their doors opened because he was fasting. Cole had 11 (no that's not a typo) tubes of blood drawn. What a trooper he was too; didn't flinch, cry, or move... just watched. After that I rushed him to the cafeteria for some food afraid he was going to pass out on me. He was fine though. He had an echo, EKG, and DEXA scan after that. I was so proud of him. He laid still for all of the tests and everyone commented on how well he was doing during the tests. I also got a phone call from the pharmacy in London and ordered 3 months supply of Deflazacort. It should arrive in 8-10 days, then he can stop the Prednisone. He had a 4 hour Neuropsych eval and in the middle of it the doctor came out to the waiting room to inform me he had put two chairs together, laid across them, & fallen asleep! Poor child was exhausted so we let him sleep and she did some paperwork. 2 hours later she woke him up to finish the test. He fought through it, but I had to call Mike to give him some extra encouragement and that seemed to work. We ran into another Duchenne family and went to dinner down at Newport on the Levee and let the kids take a train ride and go on a hamster ball- the pic below is of Cole in one. He absolutely loved it and made me so happy to see him enjoy something that I personally didn't think he would physically be able to do... But he did!

Thanks again to everyone who has read, shared, and donated!!!! We truly appreciate it, I can't thank you enough!!!!!
+ Read More
Update 1
25 months ago
Cincinnati Day 1 complete: Met w/ Neuropsych, Neurology (Dr. Wong & her crew), and PT. It was a very productive yet long day (9a-7p) in the hospital with a 4 yr old. Found out that his genetic testing hadn't been completed which would have excluded him from being in a clinical trial if not done. Fixing that today. That alone was reason enough to confirm that I made the right decision in bringing him out here. My main goal is for him to get into a clinical trial as that's his best chance at living a longer, healthier life. He is being switched from Prednisone to Deflazacort, which is another steroid he will have to take for life but it hasn't been approved by the FDA yet. It is more expensive than Prednisone and isn't available in the US. I spoke with the pharmacy in London, England this morning and ordered a 3 month supply that should arrive within the next 8-10 days. PT says the stretches we are doing are good and gave us a few more to do with him as his hamstrings and heel cords are a little tight. Cole will be disappointed that we have to get rid of his trampoline. He has a triangle shaped single jumper with handlebars that he loves, but the doctor said he needs to avoid those and bounce houses due to the muscle breakdown they cause. Once he uses it and it breaks down, he loses it. That's one of the many parts of DMD I hate- not only am I watching my child slowly die, but it's robbing him of activities that he should be able to enjoy. Life's not fair; I understand that, but when it happens to your child you feel completely helpless. It's very frustrating.

I want to thank each and everyone of you that have read & shared Cole's story. The more awareness there is of Duchenne, the better chance of getting funding to assist in finding a cure.

A HUGE THANK YOU to everyone who has made monetary donations. This wouldn't be possible without your help & with Dr. Wong confirming that we will need to follow up every six months, it is sincerely appreciated! Thank you, Thank you, Thank you!!!!
+ Read More
Read a Previous Update
Help spread the word!
 1.3K total shares
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More

$5,713 of $7,500 goal

Raised by 93 people in 25 months
Created July 9, 2014
AT
$100
Andrew Teffeau
12 months ago
$20
Anonymous
12 months ago
CC
$40
Casey Calvetti
12 months ago

What a precious little boy. I hope you all have the most magical time at Disney. Praying for your sweet son.

+ Read More
MJ
$20
Michele James
12 months ago
CL
$100
Carrie Lytton
12 months ago

Enjoy Disney Radford friend!

+ Read More
KM
$100
Kathleen & Doug McNeely
12 months ago

Our thoughts and prayers are with Cole and Mandy.

+ Read More
KH
$50
Kara Hearn
12 months ago
GM
$50
Grace MacDonald
12 months ago

We are so excited about your trip to Disney World, Cole! You and mommy have a wonderful time. We love you!!!

+ Read More
AH
$25
Alison Hall
12 months ago

Praying for you & your little boy! Wishing you the trip of a lifetime at Disney!

+ Read More
WB
$125
WJCC Bright Beginnings
17 months ago

We rootin' for you Cole!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
Cheryl Riley
25 months ago

God Bless you Cole & Mandy!

+ Read More
  Use My Facebook Account
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now
 Share on Facebook