Statement by Karen and Jeremy about misuse of Alex’s picture:
Alex’s story, and in particular the picture Jim Carrey used is not about vaccine safety. It is a story of extreme autism and self-injurious behaviors. It is a story about TSC (Tuberous Sclerosis Complex) and its association with autism. Alex safely received his vaccinations — his genetic disorder was present at birth.
We believe that families who are struggling with extreme autism and severe problem behaviors need more help, in their own communities, than they are currently receiving – gaining access to highly sophisticated Applied Behavior Analysis such as what Alex was provided at Kennedy Krieger Institute’s Neurobehavioral Unit at Johns Hopkins, gaining access to mental health providers trained in highly complex cases such as Alex’s, and providing more options and resources in local communities to those families who are no longer able to care for their loved ones in their own homes. We also believe that the medical community at large needs to look more closely at the potential for medical marijuana in treating these severe behaviors.
There is hope for individuals suffering from severe problem behaviors who have autism (and/or a developmental disability), however, many families have given up hope due to lack of resources.
We feel Mr Carrey was irresponsible in using our son’s image to further his agenda, and feel he should issue an apology for using our son’s image without permission. If Mr. Carrey’s image was used this way, legal action would almost certainly be taken.
We’re not happy that Mr. Carrey used our son’s picture, but we are happy to use this attention to spread the word about our son’s actual struggles.
As a grandmother of my two and a half year grandson , Brody,who has TSC and separately PKD disease.. My heart goes out to you and your family. I am sorry Alex’s picture was used without your permission. The pain and struggles of TSC are difficult enough on families. Hopefully as you stated it will help bring attention and spread the word of the rare disease TSC. I am proud of my daughter who went to Washington DC to speak to members of Congress to approve funding. Perhaps with the attention someone will listen and families can get some satisfaction that there are others who care. Stay strong.
It’s clear that Alex is a complex case. That is his needs are severe. That more needs to be done to help this precious child. TSC causes pain. Specific strains of medical cannabis are known to alleviate pain. Thus, those strains should be readily available to people like Alex who are suffering from self injurious behavior due to their disability. Research shows antipsychotics, SSRI’s and benzos like ATIVAN have completely failed to mitigate the pain and suffering in special needs children who suffer from self injurious behaviors. The challenge with cannabis will always be “WHAT strain do we use?” since every strain is different. For instance, for people with ADD, they would benefit from a cannabis strain that is high in THC, but doesn’t promote “brain fog”. In a case like Alex’s you would need to carefully evaluate the strains that target pain, anxiety, are anti-inflammatory (given his tumors based on his genetic condition) and that are a HYBRID strain, for example, White Widow or Harlequin, high in CBD with some THC for the pain. Or find a strain very high in THC without any medical side effects that cause “confusion” or “paranoia” and MIX that with a strain high in CBD and very low in THC. Scientifically, this should work. Consult the medical cannabis doctor to confirm. God bless you. You are awesome parents!
I would also advise that you consult medical cannabis doctor regarding writing specific INSTRUCTIONS about when to give, preferably get the doctor to specify PRN, as needed, since only YOU will know when he needs it, since you are the experts in your son’s needs. From there, ask the medical cannabis doctor to write down specific strains that you have researched and ARE available to you to get, so you can administer them. Strains known to help Self injurious behaviors in special needs children and adults are Harlequin cannabutter (you can find recipe to make cannabutter on line), Cannatonic, AC/DC, (yeah I know, the name is absurd), White Widow, Sour Tsunami and Blue Dream. You can, according to laws in your state, also seek out “clones” that you can buy to grow on your own so you know exactly what your son is getting. You will need to follow the law in this as per your state. Making sure you get a caregiver card and are allowed to grow a certain amount for your son. It’s a difficult task, but there are people who can help, specifically ask your medical cannabis doctor. It’s always important to follow the law to the best of your ability and ensure you stand firm in the reality that you were out of options. You tried what the conventional docs told you try. So , in good faith, you did what any SANE and caring parent would do: you look for other options. Look, it isn’t like medical cannabis is being sold in the back alleys and you have no clue what your son is getting. If you follow the laws, seek out legal dispensaries, seek out a certified medical cannabis doctor, and seek the specific strains that are known to mitigate the symptoms your suffering child has, you will be fine. Hang in there parents. I am so inspired by your dedication and love for your child.