Many years ago, I saw Make-A-Wish ads and thought how wonderful it was that sick children would be able to make any wish and have it come true. What I didn't know then was that I'd have a daughter who would be a recipient of one of those wishes. On March 17, 2016, our lives were changed when Bella was born. She was diagnosed with an extremely rare genetic disorder called Pontocerebellar Hypoplasia Type 6 (PCH). She was given an 18-month prognosis due to the way she presented at birth. This began our journey with Bella and living with a child with a terminal illness. Most kids with PCH do not live past infancy. There are huge ranges in ablilities with this condition, but some, like Bella, will never play on their own, crawl, have purposeful movements, eat regularly, talk, or be able to take care of themselves in any way. In Bella's case, her respiratory system is extremely fragile and she experiences multiple seizures on a daily basis. She is now almost 3 years old, and with the support of doctors, therapists, friends, and family, she has been able to aquire much needed equipment to help her enjoy life to the fullest. Every day is a blessing to share with her, and we do our best to make the most of each day. Make-A-Wish has granted Bella a wish, as they have many children with illnesses, and they have added to the joy of each child that they have touched.
Making Bella's wish come true is still in process, but her wish was to have a double stroller so that she could sit next to her sister, Lilly, when we all go out together, and not have to be in separate strollers. Bella loves going for walks, experiencing nature, and being outside, so having a stroller that we can all go out more easily in to enjoy the world will be fantastic! We are working closely with the coordinators and volunteers to find the perfect stroller for Bella. There are so many children who have wishes...they wish to go to Disney World or on a special trip, or be a super hero for a day, or to swim with dolphins. Make-A-Wish makes it possible for these kids to be granted their one wish and to feel like super stars. First, the nomination is sent to the organization, then volunteers come to the home to meet the family and talk about wishes. Then others at Make-A-Wish do all they can to make those wishes come true, no matter how big or small.
I used to be a very avid runner. When Bella was born, and ever since, I have not been able to find that motivation to get back out there. Life has had many ups and downs. We have suffered a few lost pregnancies since through the exhausting and stressful IVF process, and it's been a hard few years. But, I know I have to get back into something that I love, and try to do it for a cause. So, I have signed up for the Rock 'N' Roll DC Marathon on March 9th, and what a better inspiration to train and run for than Make-A-Wish?! They have done so much for our family, for other PCH families, and many, many other families out there who have kids with serious illnesses. They truly have changed lives for the better and brought a little more happiness to the world. Having their wishes come true and seeing their faces light up with smiles for just a day is a huge gift to them, but also to their parents and all the people who love them. Wish kids are some of the bravest and sweetest kids you'll ever know. Their innocence, simplicity, and unexpected wisdom stays with you. They are the true meaning of love.
A wish come true helps children feel stronger, more energetic, more willing and able to battle their critical illnesses, and for many, the wish marks a turning point in the fight against their illnesses. Doctors, nurses and other health professionals say, the wish experience works in concert with medicine to make their patients feel better emotionally and even physically. No matter what type of illnesses these children have, their lives are more difficult on a daily basis. So, helping them to forget their challenges and struggles for just a short time is priceless.
More kids are waiting for their wishes. Please join me in helping these terrific kids realize a dream come true. Come...please RUN "WISH" ME! Donate today and support Make-A-Wish to grant more wishes to these super special and unique children who truly deserve it as they fight to be cured, find peace, or simply find joy and live life to the fullest. Thank you for your contributions to this important cause!
With much gratitude,