Haydin Jones fight against MLD

Haydin is 4 years old and was diagnosed with a rare disease called Metachromatic Leukodystrophy(MLD). She can't walk or crawl,can't stand up on her own, has weakness in her arms and legs, is shakey,has muscle spasms,cant talk,just started having seizures, has nerve pain,and a feeding tube due to aspiration issues and severe weight loss(which she gained back). With this disease it kills off the nerves, that is what is causing all her symptoms, this thing is deteriorating her nerves pretty fast and with no trace of stopping. According to the doctor theres no way of slowing it down and there are no cures.Unfortunately the life expectancy is 5-9 years..hearing you have a limited time with your children is a nightmare to every parent and we will continue to do whatever we can to make this reality ONLY a nightmare .  
We looked into clinical trials but unfortunately we got turned away for every one because shes too symptomatic.The hospitals and doctors have shown to be not much help as far as giving us the things she needs which is stressful, its because of them we did not make it into the clinical trial on time before things got too bad.She has physical therapy once a week that was suppose to help with equipment but like the hospitals and doctors they took too long so to prevent that any donations we get will be going towards equipment needed to help benefit haydin.We have been taking her to a holistic chiropractor (John Bergman) who believes he can get her back to normal so we pray he is right.Donations will go towards gas to get haydin to him once a week as well because he is located in Huntington beach,we are definitely seeing a change for the better since going so continue prayers that he is right and fixes our baby girl.Recently we have just started taking her to a second chiropractor(Bill Lyon) that does laser rejuvenation treatment on her.What it does is heals any bad or dying cells in her body which in the long run will help to heal her nerves and muscles as well.He's had many successes including getting a child with symptoms like haydins to walk and talk again. At the end of June Haydin started having mild seizures, which if you look up MLD you will find that its one of the lovely symptoms that comes with MLD :/ we have them under control so far since we started giving her her meds every 5 hours instead of as needed and she seems to be doing good so far. The thing we have found that triggers them is heat so we have been keeping her as cool as possible and inside when its too hot. We have seen so much progress lately, she is starting to lift her head up by herself for a good minute at a time, she is getting better at looking around(turning her head from side to side following things), and lifting her arms and legs around in either a stretch or just random movements.

If anyone else knows of any other trials, informatiom, ways of fundraising, or has/knows someone with MLD like and share her page so we can get the word out.Going threw this is not easy and we want to help families as best as we can, hopefully our information given can also help any in getting a diagnosis.   Thank you
Mariah, Josh, Haydin & Nevaeha(little sister)