❤️🙏🏼❤️So many of you know Aiden and have followed his journey and supported him and our family in numerous ways for a long time!
We cannot thank all of you who have donated to passed causes and lifted our family up in hard times enough.🙏🏼❤️🙏🏼
There is no cure for Spina Bifida and so for Aiden there will continue to be extra support needed and the Spina Bifida Association of Greater New England has become a huge and newly important resource for Aiden especially as he is getting older and needs are changing for him!
For those of you who are new to Aiden's story though...here it is in a nutshell...
During our 18week ultrasound we found out our baby had Spina Bifida. We didn't know what that was or what that meant. We were offered termination on several occasions as we learned more about what this meant for our baby!
Of course that was never an option for David and I so we found another option...there was a clinical trial being conducted at 3 Fetal Centers in the US where they were trying to see if closing the "hole" in babies backs in utero would reduce some of the long term damage done by this birth defect.
In a whirlwind month we were accepted to the trial and randomized to fetal surgery!
I went into surgery, they opened me up, got to Aiden, sewed him up as best they could and then put us back together again. We spent the rest of the pregnancy in Philly and delivered a very healthy Aiden at 37weeks!
Since Aiden was born he has undergone 11 additional surgeries...some "minor" but most quite significant with complications, lengthy recoveries, much missed school and lots of hard family separations!
We were told things like our baby would probably never walk, that he would have poor quality of life, that many people cannot care for a child with the needs he would have...this is why I call our team and every team I've ever made for Aiden, Every Day Miracles.
Every day Aiden gets out of bed and gets himself ready for school is a miracle, when he walks out to the car or runs down the drive way it's a miracle, when he achieves straight A's and learns how to jump...it IS a miracle!
So as we enter this next chapter of his life and think about things like transitioning to independant living and adulthood... Aiden making connections with peers who are like him, who understand what daily life looks like for him and the challenges he faces is VITAL!
We had a glimpse into that 6 weeks ago when we were able to attend an event put on by SBAGNE and he was able to meet, hang out with, have fun with and TALK with boys his age with Spina Bifida...something we have never been able to do before. The beginning of this network is huge for not only Aiden but also our whole family!
SBAGNE counts on donations to help run these incredible programs and it is my hope to support them so that we can continue to help Aiden have access to the fullest brightest future ahead!
If any of you can help us in this effort we would be incredibly grateful ONCE AGAIN!!