| Nicholas loves Save-A-Limb. He always thought it was a party to celebrate kids in fixators. This year I told him that we are raising money so kids who need fixators can get them even if the don't have the money. But he doesn't understand that we are trying to save limbs from amputation.
Almost any other major medical institution would have told us to amputate his leg. We were told that the International Center for Limb lengthening was the only place to go for a second opinion unless we wanted to hear amputate over and over again. Amputation is an effective treatment, any orthopedic can do and that is why it is till the standard treatment for fibular hemimelia and similar limb defects.
We know that had we chosen amputation Nicholas would be doing well, as many children do. But if he could do just as well and have his own leg, able to not only walk but to feel sensation as well, why amputate? I have envisioned my boy hopping out of bed as an adult with 2 feet on the floor, going to the beach and feeling the sand between his toes, and living without limitations.
Nicholas had his second limb lengthening surgery on March 24th of this year. He has gained 11cm of new bone between his two surgeries. His growing is done but his fixator will be on until his new bone consolidates. Nicholas has continued to amaze us all with his strength both inside and out. He is such a happy boy and I know we are so fortunate to be able to take him to Baltimore to see Dr. Standard. We wish everyone had access to the RIAO.
Nicholas disproves a lot of doctors theories that you cant lengthen for sever cases of fh like his. He will need another lengthening surgery, surgery on his knee and surgery to stop the growth in his left leg early. It is more than any child should have to handle but we know that Dr. Standard will do what is best for Nicholas.
Thank you to everyone who has supported us and Save A Limb. Nicholas has had the best treatment in the world and we feel very strongly that every child should have access to the same limb saving treatment.
The Save-A-Limb Fund ( www.savealimbfund.org ) was established in 2001 to provide funding for limb lengthening surgery to adults and children from around the world who suffer from congenital or developmental limb deformities. The Fund seeks to provide assistance with not only the cost of surgery and hospitalization but with other costs associated with the procedure, such as travel expenses and physical therapy.. In addition, the Fund has aided in the purchase of digital radiography, which minimizes patients’ exposure to radiation and it will help fund a new pediatric wing for RIAO patients.
Read more about our families journey at:
http://fibularhemimelia.wordpress.com/ | 
