Alarick’s Story

Site created on May 2, 2019

My son was born with a type of skeletal dysplasia a genetic disorder called tibia hemimilia caused by 2 extra chromesomes. his tibia bone in leg is NOT formed and is going to have to undergo many more dr visits as well as reconstructive surgery if possible but also could be possible amputation.

We had an appointment April 30th at childrens hospital for my almost 1yr old son alarick to figure out what has/needs to happen with my sons condition of tibia hemimilia affecting his right leg deformity. Well we found out today that He doesn't have an ankle and not only is his foot not formed properly he's missing some functions in his foot that he should have and he doesn't have them so we have to amputate at the foot I have to call Monday to schedule the appointment for the amputation so it's going to be happening soon and when it does we will be in the hospital for anywhere from 2 days to a week and then will have to be home with him for a couple weeks for healing and prosthetic fittings and doctor follow up appointments and possible procedures. I am a single mom of 2 kids and need help with transportation expenses as well as rent and other bills so that we dont loose our place to live. please help with any thing you can i will be out of work for around a month. Anything helps thank you

Newest Update

Journal entry by dawn hentschel

They had to take more of the leg than intended because of the formation of the tibia but hes doing good only 4 hours out of surgery
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