My daughter , Honor (12), has recessive dystrophic epidermolysis bullosa (EB) a very rare disease they refer to children with her condition as butterfly skin because of how fragile the skin is , the slightest friction causes her skin to tear and rip open she is wrapped completely only leaving her head neck and hands out due to her skin being damaged her hands have webbed together and she can no longer open her hands nor use her fingers we have found a doctor willing to do hand surgery and reopen her hand and fingers but unfortunately insurance will not pay for it we have been saving up for it but they are getting worse and worse and it’s hard for her to do daily task I absolutely do not like asking for help but we are in desperate need of it at this point any donations will be greatly appreciated the surgery itself is $52,000 plus the cost to be able to stay in another state for 3 months while she gets it done , she has to see the doctor for follow up twice a week for the first three months so we will have to stay out there we do have close to half saved but time is getting shorter and shorter to get it done. Thank you for any help