AGXStarseed
Well-Known Member
(Not written by me)
Desperate mother who has dedicated her life to finding treatment for profoundly autistic son Connor prepares to take him to Panama for 'highly experimental' trial to 'biochemically reboot his brain'
He does not speak, is hypersensitive to sounds and makes strange vocalizations and movements.
But now, Connor White, 12, who is severely autistic, is preparing to fly out to Panama to take part in a highly experimental stem cell therapy trial following a 'lifetime' of research by his devoted mother.
The youngster, who lives in Bangor, Maine, is among 20 children from across the US accepted onto Phase 2 of what scientists in the Central American nation say is a 'groundbreaking' program, which claims it can 'biochemically reboot his brain'.
And despite the fact the treatment is not approved by the Food and Drug Administration - nor sanctioned by the Autism Science Foundation - Connor's mother, Rachel White, is optimistic.
'When I started looking into it I saw a promise of hope that, prior to that, we did not have,' said Ms White, who also has a daughter with autism and has 'dedicated her life' to researching treatments.
She insists that she is 'not delusional'.
'The reality is Connor will still be autistic at the end of the trial. [But] if what we are doing is a step forward in curing autism, that is very exciting,' she said.
The upcoming trip - which will be the first of four flights to Panama for the trial - is the result of a five-year effort by Ms White to get her son accepted onto the program at Panama's Stem Cell Institute.
She initially heard of the Allogeneic Umbilical Cord Mesenchymal Stem Cell Therapy for Autismclinical trial - five years ago, but Connor was not accepted onto the Phase 1 study.
However, he was recently granted the chance to be a part of this year's study - something that Ms White immediately jumped at as an opportunity to potentially lessen her son's extreme symptoms.
This is despite the fact that the treatment is not approved by the FDA - therefore, has not been confirmed as safe and ethical by regulators - and will cost the family an estimated $17,000 in total.
The Autism Science Foundation also warns: 'There is no evidence that the treatment is safe or effective for autism, and no guarantee that the stem cells used in these countries are even human.'
And Gordon Smith, executive vice president of the Maine Medical Association, told the Bangor Daily News that there is a risk of scams and fraud for patients traveling abroad for medical treatment.
Some facilities may offer false hope instead of genuinely amazing therapies, he said.
However, he added that, in the Whites' case, the autism study is listed on the U.S. National Institutes of Health-maintained website - and has apparently been viewed positively by the family's physicians.
Indeed, Ms White herself said of the experimental study: '[Connor's] pediatrician and his pediatric nurse have been nothing but supportive through every prior step that has brought us to today.
'They understand how much this means to me and what this could mean for Connor.'
Connor, nicknamed 'Connor Man' by friends and family, was diagnosed with severe autism at the age of three after exhibiting 'certain behaviors that concerned his doctors' at just one years old.
These behaviors included a lack of eye contact, hand-flapping, a lack of speech, odd vocalizations, peculiar toy habits, struggles with change, and hypersensitivity to sounds, according to his family.
Due to his condition, Connor could find the flight to Panama on June 7 particularly distressing, said Ms White, who described the stem cell treatment as 'a biochemical reboot' of her son's brain.
'Every sound comes at him with equal intensity,' she said, explaining how she and Connor have made frequent visits to Bangor International Airport to prepare him for the upcoming journey.
According to the Stem Cell Institute, the adult stem cells that will be used in Connor's treatment come from donated umbilical cord tissue and can possibly reverse some symptoms of autism.
The cells can help to regulate patients' immune systems, it says.
Connor's family have set up a GoFundMe page to help fund the treatment for the William S Cohen School student, which has apparently been approved by Panamanian food and drug regulators.
On the page, Connor is described as a loving boy who 'enjoys long walks, jumping on his trampoline, bouncing on yoga balls, puzzles, eating, educational games on his IPad and staying busy'.
The family has also held numerous fundraising events with support from their community. The study is due to end in 2017. A third phase would need to occur before new medications were sold.
SOURCE (With Images and Video): US mother takes autustic son to Panama for 'highly experimental' therapy | Daily Mail Online
Desperate mother who has dedicated her life to finding treatment for profoundly autistic son Connor prepares to take him to Panama for 'highly experimental' trial to 'biochemically reboot his brain'
- Connor White, from Maine, was diagnosed with severe autism aged three
- He does not talk, is hypersensitive to sounds and makes odd movements
- His mom, Rachel White, has 'dedicated life' to finding possible therapies
- Now, Connor, 12, is embarking on a highly experimental trial in Panama
- Treatment claims to 'biochemically reboot his brain' using adult stem cells
- However, it is not approved by the FDA nor Autism Science Foundation
- Rachel White has paid $17,000 to participate in the experiment
He does not speak, is hypersensitive to sounds and makes strange vocalizations and movements.
But now, Connor White, 12, who is severely autistic, is preparing to fly out to Panama to take part in a highly experimental stem cell therapy trial following a 'lifetime' of research by his devoted mother.
The youngster, who lives in Bangor, Maine, is among 20 children from across the US accepted onto Phase 2 of what scientists in the Central American nation say is a 'groundbreaking' program, which claims it can 'biochemically reboot his brain'.
And despite the fact the treatment is not approved by the Food and Drug Administration - nor sanctioned by the Autism Science Foundation - Connor's mother, Rachel White, is optimistic.
'When I started looking into it I saw a promise of hope that, prior to that, we did not have,' said Ms White, who also has a daughter with autism and has 'dedicated her life' to researching treatments.
She insists that she is 'not delusional'.
'The reality is Connor will still be autistic at the end of the trial. [But] if what we are doing is a step forward in curing autism, that is very exciting,' she said.
The upcoming trip - which will be the first of four flights to Panama for the trial - is the result of a five-year effort by Ms White to get her son accepted onto the program at Panama's Stem Cell Institute.
She initially heard of the Allogeneic Umbilical Cord Mesenchymal Stem Cell Therapy for Autismclinical trial - five years ago, but Connor was not accepted onto the Phase 1 study.
However, he was recently granted the chance to be a part of this year's study - something that Ms White immediately jumped at as an opportunity to potentially lessen her son's extreme symptoms.
This is despite the fact that the treatment is not approved by the FDA - therefore, has not been confirmed as safe and ethical by regulators - and will cost the family an estimated $17,000 in total.
The Autism Science Foundation also warns: 'There is no evidence that the treatment is safe or effective for autism, and no guarantee that the stem cells used in these countries are even human.'
And Gordon Smith, executive vice president of the Maine Medical Association, told the Bangor Daily News that there is a risk of scams and fraud for patients traveling abroad for medical treatment.
Some facilities may offer false hope instead of genuinely amazing therapies, he said.
However, he added that, in the Whites' case, the autism study is listed on the U.S. National Institutes of Health-maintained website - and has apparently been viewed positively by the family's physicians.
Indeed, Ms White herself said of the experimental study: '[Connor's] pediatrician and his pediatric nurse have been nothing but supportive through every prior step that has brought us to today.
'They understand how much this means to me and what this could mean for Connor.'
Connor, nicknamed 'Connor Man' by friends and family, was diagnosed with severe autism at the age of three after exhibiting 'certain behaviors that concerned his doctors' at just one years old.
These behaviors included a lack of eye contact, hand-flapping, a lack of speech, odd vocalizations, peculiar toy habits, struggles with change, and hypersensitivity to sounds, according to his family.
Due to his condition, Connor could find the flight to Panama on June 7 particularly distressing, said Ms White, who described the stem cell treatment as 'a biochemical reboot' of her son's brain.
'Every sound comes at him with equal intensity,' she said, explaining how she and Connor have made frequent visits to Bangor International Airport to prepare him for the upcoming journey.
According to the Stem Cell Institute, the adult stem cells that will be used in Connor's treatment come from donated umbilical cord tissue and can possibly reverse some symptoms of autism.
The cells can help to regulate patients' immune systems, it says.
Connor's family have set up a GoFundMe page to help fund the treatment for the William S Cohen School student, which has apparently been approved by Panamanian food and drug regulators.
On the page, Connor is described as a loving boy who 'enjoys long walks, jumping on his trampoline, bouncing on yoga balls, puzzles, eating, educational games on his IPad and staying busy'.
The family has also held numerous fundraising events with support from their community. The study is due to end in 2017. A third phase would need to occur before new medications were sold.
SOURCE (With Images and Video): US mother takes autustic son to Panama for 'highly experimental' therapy | Daily Mail Online
