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Living with Juvenile Huntington's disease
Mia would have been nineteen this year Mia's dad and I were married in 1996 his
mother had Huntington's disease when I met him and I just remember thinking
that it was the worst disease ever it tore our family apart
HD is often portrayed as a condtion that only affects adults.
But people can get HD at any age, including as children
my husband had Huntington's disease and now Sheenam my daughter Sheenam used to
fall down quite a bit but I just thought, is that right you used to fall down quite a bit?
this so for me it was just like a normal thing that a child does. I knew I had it...
You knew you had it? Yes
It is estimated that between 5 and 10% of HD cases occur in children
This is known as Juvenile Huntington's Disease
when I was dating Ellie's dad I didn't know that they had HD in their
family and then I became pregnant and I knew that she was at risk the one thing
that we thought for sure is that we had a lot of time on her hand we and I
thought you know I just have a tiny little baby and we have lots of years
and lots of technologies develop so we'll just deal it deal with it if we
ever need to Toby was seven years old when he was
diagnosed he would trip over things drop things. yeah he used to fall
downstairs and all of that kind of stuff really. It was upsetting sometimes but
got through it because I really loved him a lot. He was my best brother I ever had anyone
The only one you ever had! We were best friends about we do everything together. Eloise
was diagnosed two months for Coby died and that was the summer of 2008
juvenile HD is similar in some ways to the usual adult-onset but also has its
differences we think of Huntington's disease as causing trouble in three
different areas in the movement the thinking and memory and learning and
also mood and certainly children will have those same kinds of symptoms but
the details sometimes are a little bit different for children than for adults
the mood changes can be fairly dramatic particularly if the symptoms are
beginning in the teenage years we woke up one night and Mia was literally
beating us up with a lamp off our nightstand I looked at her and she
looked at me and she was terrified and I knew the night that that happened I said
this is not normal there's something happening with this I
think for me the time when I began to suspect something was wrong
was with mood changes and also decline in school work. In school she had a
lots of learning problems cognitive learning problems and so I didn't know
that that was a sign of HD at all it wasn't tell she was a freshman in high
school and it became glaringly obvious if there was definitely more issues I
just get tired walking sometimes shaking and sometimes got the faces well
sometimes I struggle doing things so mom sometimes helped me, sometimes yes!
hmm all the time there was a local conference in Minnesota for HD I went
and I met dr. Nance and and that's when it hit me
like for real yeah they went down the list of symptoms and so many of them
like who who everyone we here was like okay check check check
and kind of dawned on us a part of the way through that was a real possibility at
that time my mom first came home and said like they think that Mia I could
have Huntington's I before that never knew that little kids could have it like
that was the first time I'm here so it was just like really shocked everything
that I thought I knew about Huntington's clearly I didn't I didn't know kids
could even get those I always thought that it was kind of something I was late
onset like I didn't understand that it really could impact children as well
Got diagnosed on my father's funeral
A day we'll never forget initially you laughed but then what happened after that? I would sit in the same chair all day and night.
How long for were you depressed?
About 2 years
Living a full life with JHD
there is meaning in life after a diagnosis of Huntington's disease one of
my dearest patients over the years was a little boy who had really the world's
worst case of Huntington's disease it began when he was 2 years old but the
kids in his class at school really embraced him and there was and they took
care of him and they loved him so here's a child who could hardly move you know
at age 10 because of terrible Huntington's disease who brought meaning
to the lives of all of his classmates Mia inspired so many people when she was
here and for people who are out there right now who are where we were in 2006
know that your kids are going to inspire and change the lives of so many people
can you think of one word that would describe Mia? special awesome
Ellie's doing great
she's 18 years old she graduated from high school she has a community support
she's doing a great program for kids with special needs to making 21 a
transition program she's got a job the light in a lot of people's lives
she has affected more people's lives and I think any of us know can you two tell
me what is an All for Elle day? We have a huge carnival we play games,
Bouncy castles. Lots of people. we're sharing about Huntington's right
how does it feel to have the whole community support you? It feels amazing
we literally just do as much as we can together and get out together we have
breakfast together now just go to school and I really love it there. Her school bus
bus she leaves to house five to seven gets and gets to school at quarter to 9 But she enjoys the school
school play she never moans about going.
You've moved into a flat...
but before then you actually started your studies didn't you? You
went to university and you did international tourism management and
where did you travel to? Miami and Michigan, you had placements out there didn't you
Can you tell us about Sheenam's Wish? Sheenam's Wish is a charity
Sheenam said that she wants's to raise ten thousand pounds for which we think about hundred young
people (with JHD) in the country to give them all to have some fun we are in a
brand new era in Huntington's disease research were therapies that are
directed at the gene mutation itself are now being studied in human beings with
Huntington's disease this is not just mice it's not just test tubes it's
actually trying these these gene based therapies in human beings if there was
ever a disease for which gene based therapies should it's Huntington's disease
What would you tell other young people who have HD?
just to stay positive and embrace all the good things
do all the fun things you can do.
to stay strong and believe in yourself
We would like to thank the young people and families in this video, who shared their stories so bravely and show such strength on a daily basis.
We would also like to thank Dr Nance for her support and knowledge on this video, and also her commitment to helping families affected by JHD.