My Story…
I am excited to be running my second Falmouth Road Race for Hospitality Homes this August in honor of Natalie. Last year was an amazing experience and I am so glad that I discovered HH. It is a wonderful organization that I am proud to support! Please help me raise funds to support families like Natalie's. Please read her story below. Thank you to everyone that helped me surpass my goal last year! Please help me achieve my goal and sponsor me this year. Thank you! Alicia
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Back around when Natalie was about 4 months old, my husband Ryan and I had vaguely started to notice that she was using her right hand a bit more than her left. *Cue me Googling "when do kids become right or left handed* Spoiler alert: It's definitely not at 4 months old. At her next appointment with our pediatrician, she noticed it too and off went a referral to a neurologist. After being told that wait times for appointments were 9+ months away at most providers we finally found someone who could see her in about 7 weeks. At her first appointment (of literally more than I can count at this point) the neurologist was optimistic about a simple shoulder nerve injury but decided to send us to get an MRI, just to confirm his thinking and come up with a plan to get her on track for using her hands more evenly. A week later, on Wednesday, November 30th, 2022, we got the news that some time during or soon after Natalie's birth, she suffered a stroke. Her formal diagnosis is cerebral palsy. This was NOT the "simple shoulder nerve injury" we were expecting. How could our smiley, smart, bright eyed, wonderful little girl have such serious thing happen to her without anyone knowing? It seemed completely impossible, but there it was in black and white. Since that day, we've had countless phone calls, physical & occupational therapy appointments, two orthopedic appointments, a referral and FINALLY an appointment with the Stroke Center at Boston Children's Hospital, enrollment in a clinical trial, evaluation after evaluation, etc. the list goes on and on. All the while we've gotten to watch the literal ray of sunshine that is our daughter hit milestone after milestone like an unstoppable kid. The clinical trial that we were able to enroll Natalie in was being done out of Boston Children's Hospital and is designed to figure out if a certain type of therapy is more beneficial to kids with Natalie's diagnosis earlier in life, versus when they get older. The study would last 4 weeks and it sounded like a dream come true! The problem was, we weren't eligible for the study unless we were located within one hour of the hospital. After making about 15 different phone calls to friends, family, and other loved ones, we'd been unable to find somewhere to stay for such a long time, and bouncing from home to home just didn't seem feasable. We were disappointed, to say the least. ENTER HOSPITALITY HOMES! After some extensive online research, I found Hospitality Homes and sent an email in a last ditch effort to find a place to stay so that Natalie could become eligible to participate in the study. Little did I know that one email would completely change the course of our lives for the better! Heather, our family services coordinator, called me within 24 hours and said that we were great candidates for their housing program and would help us find a place to stay so Natalie could get the therapy she needed! We don't think we've ever been so relieved in our lives. At the end of May, Natalie and I moved down to the Boston area so that she could receive 4 weeks of therapy in an "in home" setting. We are INCREDIBLY LUCKY to have been matched with our host Margaret who has opened up her home to us. Without her generosity, we would not be able to do this and there are just no words for how grateful we are! In just a short time, Margaret and I have formed such a strong bond and we have truly grown to love her as family. Her willingness to accept us in just as we are, let us live alongside her for this once in a lifetime experience, and be the most accomodating host I have ever had the pleasure of staying with was just what we needed and took a huge weight off of our shoulders. We will forever be grateful for Hospitality Homes for providing us with the ability to give our daughter the best care possible, without having to worry about "how?". Everyone we've connected with has truly been an inspiration to us and we cannot thank them enough for what they've done for us and continue to do for families like ours.
Description
Thank you for visiting my fundraising page!
I'm so proud to be a member of TEAM HOSPITALITY HOMES in this year's Falmouth Road Race!
Your support means the world to me and will help continue to provide housing for patients and families traveling to Boston for critical medical treatment.
With the prohibitively expensive costs of local hotels- averaging $260 per night- and the lack of sufficient hospital- sponsored housing, many patients struggle with what to do, balancing these and other out-of-pocket expenses with the already high cost of responding to a complex or chronic illness.
Your donation is fully tax-deductible, as Hospitality Homes is a 501c3 non-profit organization.
To learn more about Hospitality Homes, visit their website at: https://hosp.org/
Recent donors
Donation date | Donor name | Donation amount |
---|---|---|
Aug 10 | Danielle | $22.65 |
Aug 10 | Anonymous | $545.85 |
Aug 10 | Tammany Family | $55.35 |
Aug 10 | The D’Elias | $109.85 |
Aug 05 | Joanne & Bob Bourke | $109.85 |
Aug 04 | Dad | Undisclosed amount |
Jul 28 | The Hansons | $55.35 |
Jul 27 | The Brady Family | $109.85 |
Jul 25 | The Birnbaums | $218.85 |
Jul 24 | Mr. O | Undisclosed amount |