I can't believe that this will be my third Falmouth Road Race. What a 3 years it has been. Between Jojo getting her new leg braces, and walker to learn how to walk, mastering her first wheelchair, her 4th surgery and a second year of a pandemic, Jojo continues to amaze us every day. She is excited to be starting Boston Public School and becoming a big sister in the fall. For those of you returning, we want to thank you for all of your support and for those of you first time visitors to my fundraising site welcome and see Jojo's story below.
When we learned at 20 weeks that our baby (we let her sex be a surprise!) had Spina Bifida, neither of us had any idea what that meant. And while we were initially devastated, as we learned more about people with Spina Bfida and the lives they lead, we were very encouraged.
Within a week, we were in the hands of the wonderful Myelo Clinic at Boston Children's Hospital, meeting with the specialists who would become Jojo's doctors. And they have been amazing, especially her neurosurgery team.
Through her first 2 years, Jojo has had 4 major surgeries and a few other challenges, but she hasn't let any of that get in her way. She's a very independent little lady who loves to look at her books, work on standing and walking in her AFOs and HKAFOs, dance in her wheelchair, crawl around the house, scream at the cat, play with mama, read with dada and of course watch the local news, Bluey and her letters show (Wheel of Fortune).
We're very proud to be her parents, and I am honored to be running in her name, and of all those that SBAGNE supports.
Thank you for taking the time to read this and for donating to this great organization.
ABOUT SPINA BIFIDA:
While no one knows the cause, Spina Bifida is the most common permanently disabling birth defect that is associated with life in the United States. It’s a type of neural tube defect (NTD) that occurs when a babies neural tube fails to develop or close properly – the literal meaning for Spina Bifida is “split spine”. Typically occurring within the first 28 days of pregnancy, while the neural tube is forming, Spina Bifida often occurs before a woman knows she is pregnant.
Commonly referred to as the “snowflake condition” of birth defects because no two cases are the same, Spina Bifida can range from mild to severe. The severity depends on everything from the size of the opening to the location on the spine and is often paired with hydrocephalus (spinal fluid pressure and swelling of the brain) and a Chiari Malformation (where brain tissue extends into your spinal canal).
SBAGNE is a group of parents, adults with Spina Bifida, and dedicated professionals working together to support and encourage families and individuals throughout the Greater New England area. It is our goal to enrich the lives of those affected by Spina Bifida through education, parental support, social networking, advocacy and public awareness.
When you donate to SBAGNE, you support community events like holiday parties and summer picnics, empowering youth events like BEST&BLING, support groups for adults with spina bifida, constituent financial benefits, and more!
Help Spread the Word!
Donate to help James raise money for The 2021 ASICS Falmouth Road Race’s fundraising campaign.
|Donation date||Donor name||Donation amount|
|May 18||John and Maureen Reda||$273.35|
|May 18||Greg & Lizzie||$55.35|
|May 18||Dinwoodie Family||$55.35|
|May 18||Michael Flynn||$109.85|
|May 18||Mike and Bethany Quattrociocchi||$55.35|
|May 18||Becky Hood||$55.35|
|May 17||Kevin Lemanowicz||$28.10|
|May 17||Christopher Celentano||$218.85|