Benjamyn’s Journey with C.I.M.

Our son, Benjamyn, was born June 26th, 2018. Last Tuesday he turned 9 months old at Burlington, VA children’s hospital where he was officially diagnosed with a rare congenital disorder/deformity called isolated Macrodactyly. His form of macrodactyly is also known as static macrodactyly and here’s why. At birth I noticed that his right middle finger seemed to be a decent size bigger than all of his others...although my requests to have it checked out went ignored by pediatricians and the staff on the maternity ward. They continued to call it “unique” and told me to ignore it. Well, as he grew his finger did as well..causing way too much concern for me to just ignore it. So off to another state we went trying to get answers for our son. Now, the finger grew with him, roughly being 56% bigger than all of his other ones and this is what makes it STATIC. The ISOLATED comes from the fact that it is at this time ONLY affecting his finger...but the future holds no answers for us, unfortunately. 
Anyway, his doctor gave us three choices...
1. Leave it alone with the chance that it could get increasingly worse as he ages and become what is known as a club finger (gigantism, basically) this isn’t really an option for us or the doctor as it is unknown weather or not it will ever STOP growing...
2. Amputate the tip of it...THIS isn’t an option for ME (his mother)
3. Surgery. And lots of them...skin grafts, nerve replacement, bone shortening, soft tissue removal, and all the cosmetic work to make it look like a normal finger...

we want to help our son. We want him to live as normal a life as possible...we want the surgeries to try to give him that normalcy he deserves so much. 

These surgeries...they are dangerous because there is really not a lot of information on his condition. It’s rare, it’s hardly ever seen in the US, and they have no idea what’s causing it. But they are estimating us to have to travel with him to another state at least 12-20 more times for these operations.
luckily he has a whole team of doctors and surgeons going through his case to find the best possible surgical routes.

we are a family of four working very hard to stay above water with all of this. We know that this is what our son needs and we want to be able to do it for him. I will be taking a lot of time off of work to get him to all of his appointments and surgeries...we will Be losing a lot of income during these times. We are officially left with only one option...we need the community’s help. 
Please, join our fight for Benjamyn. Even if it’s just a quarter, every little bit helps. He’s so sweet and so perfect and just SO worth just a few minutes of your time to read this and share it. Even if you can’t donate, that’s OKAY. Please, just share this so our word can get out there, so he can get the help he so rightfully deserves, so the world can become aware of this disorder, so we can fight to get more answers and less questions about this disorder...

thank you so much.