Erin

Erin Wade 24 Years Old

May 18, 1992

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This pic was taken in our back yard. When the reporter came to our home she was the same age as Erin 22, Erin looked beautiful sitting in the chair

This pic was taken in our back yard. When the reporter came to our home she was the same age as Erin 22, Erin looked beautiful sitting in the chair

This is Erin  She is 24 years old and was diagnosed at the age of 17.  She graduated from high School, but had difficulities in her last year.  Her father also passed away her last year of school which was extremely hard on the family.  After her father passed away, and her grandmother before that, She wanted to be tested.  I knew what the precautions would be, but she was adamant, So we started the journey of doing the blood work to test for Huntingtons.  It takes awhile for the results to come back and there was a lot of counselling involved before they would give us the news.  Well we got the horrific news she was positive and her Cag count was high as well so I knew she would start showing symptoms far earlier than her father did.  Her father was 53 when he died and her grandmother was in her 70’s.  By the time her grandmother knew she had this disease she had 5 children who also had children, and they had children.  So it was running rampant in the family.  4 of her children were diagnosed as well.   Erin cried and cried and I Assured it everything was going to be ok.  We would get through this together and we will find a cure and so our journey began.  She is now in a wheelchair, She has Obsessive Compulsive disorder, can no longer dress herself and her motor skills are very limited.  I ended up having to take time off work and will now have to retire to care for her.  She remains positive through all of this and never stops smiling.  She always has a smile on her face,  People say she is so beautiful and loving.

Erin was very thin from 4 years ago when she almost died from severe ulcerative colitis, She was hospitalized for a month and had a feeding tube.

Erin was very thin from 4 years ago when she almost died from severe ulcerative colitis, She was hospitalized for a month and had a feeding tube.

She played Rugby, volleyball, in highschool and had many friends.  She now has very limited friends because she can no longer do the things healthy adults do.  Her hopes of having children and getting married have all gone.  I started the Pie in the Face Challenge for Huntington’s in Canada and it has taken off really well, so that awarenss can be raised and donations can come in for Research and Drug Trial Testing.   Erin also has Ulceritive Colitis, which she has infusions for every 8 weeks.  It is very hard to watch her go through this as well as they can never find her veins and

usually have to poke her several times before they can find one, but still she never says anything.  She is just happy because I always take her for lunch afterwards.  We continue to have hope and I spend everyday with her and enjoy all the moments  

pie in the face for hd

pie in the face for hd

The Pie in the Face Challenge has made her very happy.  She loves watching all the videos and has the biggest smile on her face.  Sometimes the little things mean the world.    Erin was born on May 18 1992, just missing her Fathers birthday by 2 days.  Her favorite colour is Pink and she cant wait to get her new wheelchair in hot Pink…..   The mud photo is when I took her to Costa Rica this year,  I try and take her on a vacation every year but this past year was tough, as there was a lot she could not do, but she still had a great time.

Last time she had a Gran Mal seizure and quit breathing. I had to revive her. 

Erin will now need a port installed to continue with her transfusions. They can no longer find her veins and it is too difficult for her to go through hours of poking trying to find a vein and having the blow. We in the process now of getting a port for her, so she no longer has to go through that. Hope this works much better.

Erin’s Mom Cindy Moore

  • Erins Bucket list a trip to Jamaica with her family and caregiver.

  • Meet Katy Perry

  • She would love to go on a Disney cruise

You Can Donate To Her Bucket List By Emailing Her Mom: moore179952@hotmail.com

erin

About Erin

ErinHer Favorite Color Is Pink. She loves going to the mall, movies, McDonalds is her favorite and she loves sweets like crazy. She love it when some of her old friends come to visit her and she likes tv shows, like Criminal Minds, 18 and counting, Say Yes to the Dress, Her favorite movies are Horror and she loves love story movies.

http://www.recorder.ca/2014/09/13/terminally-ill-daughter-always-smiling

15 comments on “Erin
  1. Amy Deel says:

    Can they put in a port for the IVs so that she doesn’t have to go through the agony of trying to find a vein? Two of my children have JHD and I have another who had cancer. Just wondering if a port would help.

    • CM Moore says:

      I looked into getting her a port but with the infusion medication has side effects. It lowers your immunity system. So with her having huntingtons and taking the infustion, she has a greater risk for infections. So I have decided against for now, they use heating pads and go by feel. The nurses are amazing and really take their time. An infection could be devasting. Thank you for your advisce though.

  2. grannyjanj says:

    We put a port in my grandson who is immune-compromised, and it has been a blessing! It was so hard to get his vein for infusion (he has IVIG every 4 weeks). We have had absolutely no problems with infection, and he’s had it for over 4 years. Might be worth taking another look.

  3. john9599 says:

    hey is there a way i can see her i am one of her friends from a while ago and i was hoping to help with her bucket list

  4. Helene Denis says:

    I just wanted to say what a beautiful, inspiring lady Erin is. A (young symptomatic) lady with a such a beautiful smile … THANK YOU both and all for bringing awareness to this horrific disease. If I may, I would also ask Erin to send some positive affirmations to Chantal, my daughter who is also HD + Chantal is 27 yrs. old, with a daughter whom I am now raising. Chantal is extremely depressed and contemplates ending her life a lot. Rationalizing and reasoning are skills she no longer possesses…hence the reason she moves out and then moves back in every 2 wks. or so. Anyway, just hoping you can send prayers and affirmations to my Chantal! Bless you both:)

  5. CM Moore says:

    Anyone that would like to contact Erin, please call me at 613 498-2777 or you can email me at moore179952@hotmail.com. Erin had a friend from school that she has not seen in 5 years come over the other day. She was so excited to just to talk to people she knew. Her speech can be a problem but if she goes slow, you can understand her. They made out fine. So just email me and we can set something up if you would like to se her or call. Thanks.

  6. CM Moore says:

    Hi Helen. Erin does not really go on face book, but she texts, I am not sure where you live, but I would love to talk to her and support her in any way I can. She can pm me on facebook if she wants. I am under CM Moore. I will try and help her with anything I can. Also I have created a page on facebook under finding a cure for Huntingtons. I post all the latest information I have and it looks like there may be a positive trial drug study coming out the beginning of the year. Tell her to stay strong because we are going to kick ass with the pie in the face and find a cure. xoxo Praying always for hope and courage to get through this.

    • Helene Denis says:

      Thank you! We are in Sudbury ON, Can. I will look at that page ….quite anxious to see the results of the trial drug study!

  7. CM Moore says:

    Currently we are trying to raise some money so Erin can get a stairglide in her home so she can have access to the downstairs where the fireplace is. We have had people offer to donate but they do not fit our stairs and we can not buy the extra rail. If anyone can help with this it would be greatly appreciated. Thank you so much.

    • CM Moore says:

      Erin stair glide has been installed. so exciting. It was donated from a family that had to put their mother in a home. I am overwhelmed from the generosity and support of our community. Everyone as been so kind.

  8. CM Moore says:

    Erin will now need a port installed to continue with her transfusions. They can no longer find her veins and it is too difficult for her to go through hours of poking trying to find a vein and having the blow. We in the process now of getting a port for her, so she no longer has to go through that. Hope this works much better.

  9. Iam thri that Erin got her port,although I dont have Huntingtons’ I have dysfunctional
    veins and its excruciating to draw blood from me as well,,I have adult onset type two
    diabetes,and take insulin four times a day,its exhausting to have a chronic disease and my
    kidneys are excreting excessive protein called albumin so I dont have the physical energy
    I had before all these symptoms started at the age of 32.
    What burns me up,is children and adolescents being at risk
    for a horrendous disease,that stigmatizes them socially,growing children have enough issues with self esteem,Huntingtons Disease can definitely make the affected individual
    feel totally self conscious,let alone the way other kids and adolescents tend to ridicule
    each other to defocus away from their own inadequacies.
    I learned about Huntingtons’ Disease at Nassau Communities
    college in a biology class,and the instructor had all of us write a biology paper on a
    genetic diseaese since I have a relative with epilepsy,I picked another movement disorder
    and my choice was Huntingtons’ Disease since this condition was stigmatized in a brutal’
    manner by the colonists in Salem Mass,around 1620.,
    I visited Salem Mass with my husband twenty five years ago,
    and the guide told us,that the majority of villagers who had bizzarre movement disorders
    were burned at the stake in the Village Commons and this horrified me to no end,
    Although there is continuing prejudice and ignorance, even since
    folk singer WoodyGuthrie of the 1950′,era,Huntingtons’Disease,epilepsy,Tourette’s
    Syndrome,and Parkinsons Disease organizations have made advances in medical
    research and public awareness.
    I hope my story has been somewhat helpful,
    Diabetes is still a risky diagnoses,and balancing the pancreatic condition depends on .
    strict dietary vigilance,since cancer of the pancreas is an aggressive and deadly
    prognoses,

    Sincerely Your’s
    Mrs Corey L Ross
    AKA rikvayehudith@gmail.com

  10. Cindy Moore says:

    Thank you for your reply. I am humbled that you have taken the time to write a paper and learn more about this horrible disease even though you suffer so much yourself. No matter what cruel disease we have, if we stay strong together and raise the much needed awareness we will beat this. We live in hope everyday and live for today!! I hope Erin gets to smile everyday and be happy and be able to do as much as possible!! Again thank you!! I hope they are able to find something to help you with your diabetes. My mother suffers from this as well as many friends.

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