By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /

ALEX: I just was basically starving myself to death because food made me hurt and feel
so sick. 00:11
COMM: Nineteen-year-old Alex Visker is allergic to the proteins in foods. Just tasting a mouthful
can cause extreme nausea, crippling stomach pain, or worse. 00:22
ALEX: On a day to day basis I can’t eat any food because every single food that I’ve tried
makes me sick, or puts me in anaphylaxis. Which is when your body has a systemic reaction
and the throat swells closed and you can’t breathe. 00:38
COMM: The only way he can get the nutrition he needs is through a feeding tube directly
in his stomach. The cost of his food formula and medications is a staggering $7,000 a mont
and there is still no official diagnosis for his condition. 00:52
JODIE: It’s heartbreaking, as a parent you want to fix it, you want to find answers. 00:59
JODIE: From the time he was really young as we look back he had a lot of symptoms, nausea,
stomach pain, headaches, bone pain, muscle pain, it’s one of the reasons why it was so
difficult to pin point what was happening with him. At one point he actually was having
stomach convulsions so bad that we took him up to Primary Children’s to the emergency
room and it just started to progress so that he started to eat less and less food, he started
to be sick more, he started to spend days in bed and miss school. 01:29
COMM: And it isn’t just food that Alex is allergic to. He also has reactions to perfumes,
paints, cleaners and air fresheners. He even had toy give up playing saxophone and clarinet,
as putting the reeds in his mouth made him ill. 01:42
ALEX: It’s changed a lot of things for me, I’ve had to re-think how I’m going to do a
lot of things and make it work for me. 01:48
COMM: Alex’s parents have taken him to dozens of doctors specialists who couldn’t provide
any answers for his mysterious illness. 01:56
JODIE Being undiagnosed is one of the hardest things there is, because you have no support
group, people don’t believe you, they just think you’re crazy. 02:04
KEVIN: Y’know, he’s just resilient from a day to day, he can not feel well, y’know you
wake him up in the morning because he wants to get up and going and some days he just
can’t get out of bed. 02:16
COMM: For the last couple of years Alex has been seeing Dr. Gerald Gleich, an expert in
allergies and immunological conditions. 02:23
DR. GLEICH: In terms of the commonness of what Alex suffers from, it is quite rare.
I don’t think we know how rare. There is another disease which is related and that’s eosinophilic
oesophagitis where patients react to food and get inflammation of their swallowing tube,
oesophagus. There’s a great deal of research being done. 02:49
COMM: He now takes a combination of allergy medications, acid reducers, and drugs for
masked cell activation disorder. 02:55
ALEX: Every two weeks I get the shots that are called Xolair, it’s used to treat chronic
hives and asthma, chromyl sodium and Ketotifen which are mass cell stabilisers. And the Ketotifen
is an antihistamine. Then I’m on the Famotodine. Then I take Aller Flex and I take Benadryl
as needed. It overall makes me feel better. 03:15
COMM: Alex gets his nutrients to a feeding tube direct to his stomach, and lives off
an elemental formula containing no whole proteins. But he tries to keep meal times as normal
as possible. 03:27
ALEX: I sometimes I will cook food, I have a girlfriend and I cook for her I sit at the
dinner table with my family and I have my tube out and I pour my food in and enjoy the
conversation. I’ve always wanted my family to know that even though I can’t eat food
I’ve always wanted them to not like feel super bad. 03:46
COMM: Many of Alex’s symptoms are now under control but the $7,000 per month for his medication
and food formula has exhausted his college fund. However online donations might help
him secure his further education and future. 03:59
ALEX: My hope is that I can do some programming, be able to get a job from home and eventually
get a family. 04:06
JODIE: We would hope for a cure or for him to be healthy again. I don’t know whether
that’s a reality or not. Next best case scenario would be to just find the very best way to
be able to manage the illness and hope that there are people out there with enough compassion
to give him a chance. 04:24
ALEX: After being on medications and being able to have more of a life again, I’m grateful
that I have what I have.

Leave a Reply

Your email address will not be published. Required fields are marked *