DONATE
Declan's Present & Future Medical Care:
Ways to Donate to Declan:
You can choose a one time donation of $10, $50, $100 or a Custom Amount to donate to Declan's care.
Please leave your comment on the Donor Wall below! We will be making a donor collage wall for Declan so he knows on the hard days that all of you are cheering him on!
Thank You!
We want to thank each and every one of you visiting this page and even considering donating to Declan's care. Brendan and I are very proud and hardworking, and we do not like to ask for help. But we will do anything for our son. We have come to the reality that we have a lifetime of medical care to provide for him and we will need a community of support. We have outlined our present and future needs below and appreciate any amount that you wish to donate to Declan! Every dollar will go to helping live a beautiful and healthy life while managing the effects of Duchenne Muscular Dystrophy.
Special Thanks to:
The Maxwell in Raleigh, NC for donating their proceeds from a Winter Event to Declan's Days! Jeff & Chelsea hand are the owners of The Maxwell, a gorgeous wedding & events venue in Raleigh and dear friends of ours. We deeply appreciate your love and support!
Market Hall , The Grove at City Market , City Market Raleigh & Raleigh Night Market for hosting several fundraisers for Declan this year to help raise funds!
The Upchurch for donating proceeds from their Spring Open House to Declan's Days! Cara & Brad are generous, kind and truly caring people who have been close friends and along for their journey with us from the beginning.
Aunt Cindy & Uncle Stanley Allen for hosting a wonderful BBQ & Slaw Fundraiser in our family's home town of Roanoke Rapid's NC that was very successful and showed how family, friends and community can come together for the love of one little boy!
Present:
We have been blessed with insurance that does cover Declan's basic needs. The current additional costs for us are Additional Medical Equipment, Travel Expenses to Treatment, Time Off Work, and Additional Therapy that Insurance does not pay for:
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Handicap Accessible Mini Van - we are in the process of trading in our vehicle and on a long wait list for a van that would be able to convert to his future needs. UPDATE! We just got notified that our van is ready and we should have it by the end of March!
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Custom shoes & socks that he needs to fit his SMO's that help him walk.
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Travel Expenses & Time Off Work for his Clinical Trial visits in Florida and Appointments at Duke in addition to his weekly therapy appointments and regular check ups and sick visits like any other kiddo!
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Water Therapy - we are on a wait-list for water therapy and insurance does not pay for it. This will help Declan's strength training with minimal muscle tearing.
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Massage Therapy - this will be critical to keep prevent cramps, slow the stiffening of the muscles and to keep him walking.
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UPDATE (3/4/23): Declan has been given the opportunity to receive a Gene Therapy Treatment in Florida this Spring/Summer of 2023! We will be doing extensive travel back and forth which means lots of time away from home and work. Thank you for all of your continued prayers and support as we go through this incredible opportunity to help treat DMD for Declan!
Future:
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Power Scooter - he will use this before he needs the wheelchair to keep him mobile as long as possible
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Power Wheelchair
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Handicap Accessible Ramp for the Front of our House
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Handicap Accessible Ramp for the Back of our House
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Handicap Accessible Bathroom
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Handicap Accessible Bedroom
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Handicap Van Conversion Kit
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Second Handicap Accessible Van & Conversion Kit
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Hoyer Lift for helping him in and out of Bed.
There are likely many more needs that will arise that we are unaware of now especially by way of handicap accessibility in our home and medical equipment. This will be made even more of a challenge if and when we hit our lifetime maximum for his health insurance. This makes private fundraising all the more important for us to start early and give Declan the best opportunity for early intervention of medical treatment now that will slow the progression of DMD and give him the best chance for a longer healthier life.
Future Fundraising for a Cure!
We believe there is no disease without a cure and we are within a few years reach of curing this horrible disease that is taking the lives of thousands of young boys. Declan's doctor, Dr. Edward Smith at Duke and many others believe we are very close to treatments that could extend the lives and give many more ambulatory years to Declan and other boys before needing a wheelchair IF we can get him in the trials and IF the research continues to be funded.
We are currently reaching out to many amazing contacts in the bio genetic clinical research, DMD and Rare Disease community to learn more about how we can help be a part of the solution. We are working with our lawyer, CPA and tax advisor on the best ways to use future funds raised to support this amazing community.
Please know this is a whole new world to us. Any dollars donated right now will be going to Declan's present and future care.
Once we identify the best ways to donate towards the cure and treatment of Duchenne Muscular Dystrophy, we will list those specific efforts here and let you know where your dollars are going to research to find the cure!
Fundraising for PPMD:
We have received incredible support from Pat Furlong, the President of Parent Project Muscular Dystrophy, who works tirelessly on patient advocacy for Muscular Dystrophy patients and is a DMD parent herself. So in honor of Declan and in gratitude of Pat's efforts to help Declan get the care he needs, we are raising money for the research efforts that PPMD is doing to support the Pfizer and Sarepta Gene Therapy Protocols for DMD patients.
In December 2022 we raised $1,000 from your donations to the Photos with Santa fundraiser below which were matched by a sponsor donor for a total of $2,000 to PPMD! Thank you to all who donated.