This video may be upsetting, if you need to talk, contact us at: support@hdyo.org 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.
