Aidan Smith 

12 year old Angel

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aidan (78)Aidan is McKenna’s half-brother. Aidan is my sweet, little boy that turned 7 on September 19th, 2012. He is in the first grade and is a huge Iowa Hawkeye fan. A little over 2 years ago he started to show some behavior changes. At the time, I thought that he was reacting to his father’s illness (HD) and the fact that he was in a nursing home. However, than he started having other symptoms; frequent falling, slowed movements, stiff and pain in his legs, restless nights while trying to go to sleep.

The symptom that made me believe, without a doubt, that he may have JHD was when his handwriting changed. Instead of getting better he began to have problems holding his pencil and his writing became worse. This was at the end of his preschool year. I took him to see his pediatrician who refered us to a neurologist if the symptoms continued.

We were finally able to get a neurology appointment at the beginning of this year. Aidan had an MRI which was consistent with JHD, so the

First MRI
First MRI

genetic test was ordered…. On July 12th of this year, our lives were turned upside down when we were given the results of his CAG repeats…102. A number that will forever be in my memory. A number that will always bring a tear to my eye.

Aidan was diagonosed with petit mal seizures on July 25th after having an EEG because of the “staring episodes” that he was having. The

EEG was abnormal and he was started on Depakote. We recently made a trip to the ER because of personality changes (punching, hitting, kicking, name calling, increased impulsivity, mood swings, refusing to go to school, to name a few)aidan (56) that had taken place over the last 2 weeks while he has been at the therapeutic dose of Depakote. His Valproic acid level was 85, so he was not toxic and the rest of his blood work was normal. It seems he was suffering from some side effects of the depakote that can cause all of the things listed. We will be cross-tapering depakote and Lamictal as the replacement anticonvulsant. I believe that because of the changes in his brain due to the JHD he was more susceptible to the side effects. He’s now unable to walk, he’s bed bound. He’d still smile.

While I knew that Aidan’s symptoms are visible, it wad still hard to hear from complete strangers. Tonight at Sis’ softball game, a very, well-meaning concession stand lady told me she was concerned about Aidan when he came to the stand twice & both times he seemed pale & had tremors in his hands. I explained to her that he has JHD & she was very sweet and I think her concern was genuine. I just wonder what others think, but don’t say. I worried about kids making fun of him (he has told me that kids have made fun of the way he runs). I hate JHD!

JHD had changed my sweet, little boys life in such a short amount of time. It has changed all of our lives. 

So many people are affected by his diagnosis. So many people that 

aidan (136)

love and care for him are hurting watched him fight this disease. 

A cure is needed, so we are learning to ” LIVE IN HOPE.”

Almost every night I heard from Aidan “I wish I didn’t have JHD” when he was itchy, restless, & can’t get comfortable. Or when he fell. Tonight he looked at Sis, while they were eating dinner, and asked “Sis, do you wish I didn’t have JHD?” Of course her answer was “Of course, buddy, I wish you didn’t.” Then he asked about everyone in the family, name-by-name. I let him know that there was an “army” of family and friends that wish he didn’t have JHD. Wow, I hate this f-ing disease…. Aidan: “I hate JHD. When is it going away?” (with tears coming down his face) Me: speechless, hugged him, wiped his tears and said “When we find the right medicine…” I wish I knew when that would be.

“I hate JHD.” “I’m tired of falling.” “I wish I wasn’t itchy.” “I wish JHD would go away.”

Sept 19, 2005- March 7, 2018 

About Aidan

aidan (47)Not a very clear picture, but Aidan is loving flying!! He kept saying “Weeee!” One take off & landing. He can be quite a daredevil. He loved riding the kid roller coasters, going on rides that took him high up, and spinning rides. As long as he is sitting down and not standing (afraid he’d fall). He loves tractors, but really anything with an engine. He loved the plane rides, especially the take off and landing. Spirited is a great way to describe him and so is sweet. ‘

On our Make-A-Wish trip, he became friends with a few of the volunteers. He was very
aidan (51)determined each day that we were going to see them. And although I would assure him that we would, he would never let up until we were able to see them. He really came to adore 3 of the volunteers and even though he was persistent throughout the day of his desire to see them, it was very sweet the connection that he made with these 3 wonderful, caring people.

The story that sticks out in my mind is taking Aidan to Monster Jam Monster

Monster Jam!!
Monster Jam!!

Trucks every year. He LOVES to go! They are in Council Bluffs, Iowa the first week of January & about Spring time every time we drive by the arena they are in he asks “Mommy, when is Monster Jammie Cingular again?” He asks that a lot since we live about a mile from the arena I believe one of the pictures you have

Aidan Loved Spongebob Trains Cars Trucks Big Time Rush Iowa Hawkeyes Football Team Halloween and Christmas.of him on his story, is him at Monster Jam. He is wearing an orange sweatshirt and his hands are covering his mouth because he was so excited when they came out! He loves cars, trucks, motorcycles, just about anything with a motor. 

Ok, so Cingular was supposed to be coming…

“Mommy, when is Monster Jammie coming again?”

Denise Aidan’s Mom

Aidan and His SisterI am 14 years old and I have a lil brother that had JHD and he has benign fight this sense he was 6 and he is 9 now I love him so much and his name is Aidan Smith and I am his sister named Katelyn and my mom and I are trying to help him so much and her name is Denise and she is a wonderful mother she works hard and she love Aidan so much and I do to and I want to find a cure for my lil brother cuz he is the best brother ever that I could have i wish he did not have this thanks for supporting JHD/HD and I hope we can find a cure soon and sooner and I hope u guys support this PLZ do and I want him to be well soon so PLZ find a cure thanks and he is in third grade and I am in 8th grade and I have some hard times at school cuz I think about him to much but he means the most to me thanks I am so happy that u r still here with me buddy I am so happy u r in my life it’s been amazing 9 years with U buddy I know we have r ups and downs but we get through it together and that we fight a hard as we can to find a cure love u so much Aidan u r the brother I could ever have and I know we can fight and argue and get through it together and even though we fight and argue we will always love each other no matter what what happens to both of us or u or me but we will have fun and good memories from the past and the future and i will have memories when u r gone and my friends and teachers and staff and soccer members will pray for u the whole that u r here and forever too even if u r not here we love u so much and we need u here no matter what if you don’t know that we love u we will always and God will understand to keep u here with us but I understand that he wants u too cuz u r a really strong boy to help him with stuff but we need u more then God needs u buddy u can mean more to anyone then God but God is busy to find a cure for u to stay here for ever and when u can’t stand up or keep ur head up I will always help u with that but just keep ur head high buddy I will keep my head and heart high and pray as much ask I can with out crying I really need u the most cuz u know when I always tell you this it is true and I know u laugh at me but it makes me happy and I really need u cuz sis is to weak to carry we backpack anywhere will u help me plz I know u love to help sis that is why sissy says that love u so much u r a good helper I need u in my life more then anyone cuz u r a good helper and mom is a good helper to and a really strong mom to keep u here with us and stuff to help u fine meds and a cure to help u smile emoticon love u more then anything amen love u so much 😍😘😭😭😭 I wish u did not have this at all

Aidan’s Sister

Aidan

Aidan3

 

Aidan2

Aidan

Sweet Aidan Donating His Birthday

Kid Captain Aidan

Aidan Meets Elvis

16 Replies to “Aidan Smith”

  1. He is such a sweetie, I am so sorry for his diagnosis. My 2nd son’s cag was around the same, I hope you can get all the help you need both professionally but most importantly from other Mums who have been through this journey. Any advice we can give please just ask. Debbie xx

    1. hello, we are in the UK and I was strangely delighted to find this link from a message board on HDA here. JHD is a big no no to to keep bringing up even with people who know the probability that it will affect our kids. We have 3 adopted kids and 2 are sibs by birth their birth mum JHD symptomatic in teens. Just waiting for first paed appoinment to discuss behaviour problems with 3 yr old. Feels like a betrayal somehow pre-empting troubles and it was reading your details of Aidan that eased my feelings. thank you. Prayers for you all.

      1. Thank you for your prayers. There are some great Facebook pages for JHD support. Or you can feel free to friend me on Facebook or join Aidan’s Facebook page, Aidan’s Hope – Cure JHD.
        Live in HOPE,
        Denise

  2. Nicole, I am so sorry to hear this news! I live in Canada, so can’t help you with support groups, but just wanted you to know I’m thinking about you and your son. I lost my Keely at age 17 due to JHD, her CAG repeat was 97.

  3. Such a handsome little boy, I am so sorry ..my daughter is also at risk..only her dad wont get tested. I take her once a year to get evaluated at Mass General Hospital because they will not test her in fear of the HIPA Laws. Her behaviors have changed and im worried i dont know much about the disease only that its devastating..my thoughts and prayers are with you all

    1. Thank you for your kind words. If your daughter is symptomatic, I would document any changes that you are concerned about, so if you decide to go ahead with a test you have reasons. Aidan began with behavior problems, then frequent falling (after he had outgrown the toddler falls). The final symptom that convinced me he had it was change in his handwriting. Even though he was in preschool, his handwriting wasn’t improving as he practiced, but getting worse & he was having trouble holding the pencil. Please feel free to friend me on Facebook or join his Facebook page, Aidan’s Hope – Cure JHD. I find helping others in similar situations & promoting awareness of JHD cathartic.
      Live in HOPE,
      Denise

  4. My name is Paige, I currently am going to Lewis Central Middle School and I have a heard a lot of great things about your son. I participated in the baking fundraiser at Tastee Treat, I really wish your family the best. FIGHT FOR A CURE!

    1. Paige,
      Thank you for the kind words and for helping at the bake sale. Aidan has an amazing army of supporters at LC; students, parents, and staff. We are very fortunate to have all of you in our lives. Thank you again!
      Live in Hope,
      Denise (Aidan’s mom)

  5. Where do I even begin, Aidan has made me the person I am and I don’t know who I would be without him being here, Not only did heaven gain an angle this week he gained a son, grandson, nephew, Brother and my best friend and many more.He has had always the most cheerful spirit. Denise should know that she raised the Brightest 12 year old anyone could ask for.

  6. I’m so Blessed I got to meet you Aidan!! you’re so amazing and inspiring and loved and missed and cherished, you lit up the world and still do even as an Angel!! You didn’t let anything let you down and you drew smiles to all who came near you. Love and Miss You Aidan ❤

  7. It’s bad enough when children are physically and mentall abused, children dont ask to be born, and all
    the devastating trauma they experience with unfit parents or guardians who take their irrelevant rage out on even the smallest human beings, being born with a fatal genetic disoease predisposition ,that knows no bounds is way to much for innocent young children who are born at a 50% risk is for any neurodegenerative disorder is hell on earth.

  8. Juvenile Huntingtons Disease in my opioion , is thee cruelest disease on this earth,next to .
    stage four inoperable cancers especially the cancer’s that consume the whole brain and cannot be removed surgically or with chemotherapy perfect examples. are the Glioblastomas that promarily effect adults and the other few known as the neuroblastomasthat primarily and viciously effectyoung children and maybe adolescents
    Brain cencers and Huntingtons Disease do not know pathological boundaries because ,each of these two diseases are relentless because each causes billions of neuronss to die and they dont regenerate,and with HD and JHD, both cause issues with uncontrolled mutations that cause a rampant repetition of Cytosine,adenine and guanine nucleotide repeats.I was assigned a genetic disease at SCC in Brentwood,due to having a relativewith poorly controlled epilepsy,which isi an episodic movement disorder, I knew something about Huntingtons Disease before I wrote the term paper,so I did further medical research on HD at a local medical library

  9. Thank you for considering my reply, while volanteering at the Gurwin Jewish Geriatric Institute located in Commack,NY, I used to bring Jewish music to a female patient who had virrulent HD
    symptoms inherited from her deceased HDeffected father, whose teenage son was studying to become a rabbi, her sixteen year old daughter developed juvenile hd two years later. I bought jewish musci tapes and miraculously Jeanette started moving her feet rythmically instead of the choreic movements so characteristic of the adult form of HD. I did not inform the nurses at Gurwin because alotof them only know the basic pathological origins of this very complex polymorphic trinucleotide repeat disease.
    Most nursing staff,especially thecertified nursing assistants, who did e the custodial chores of bathing,eating ,changing soiled linens andpossibly dressing acutely ill residents, are not familiar with the many physical and emotional needs of patients who have very complex medical conditions.
    jeanette,whos adult HD symptomes were very aggressive,du to the autosomal dpminant multiple number of CAG repeat expansions she obtained from her deceased HD effected father, had to be suctioned on a daily basis
    because she lost all her bodily reflexes and required 24/7 acute care to prevent choking and
    potentially fatal suffocation required the removal of heavy accumulated mucous debris
    with the most frequentuse of her succtioning machine.
    Iam going through my own torment,my husband Scott,found out thisweek,
    that he has a 60% stenosis of an occpital cerbral artery,and his mother has stage three
    AlzheimersDisease,she already lost her ability to walk and her speech is slurring.
    And the most common form of familial Amyloidosis is defined as
    Alzheimers Disease which was a potential cause of his current symptoms from
    one of the radiological imaging reports.
    So I know only to well how any fatal genetic disease can
    wreck havoc on the rest of the family.
    Iam using my husband Scott Ross’s email as Iam very hearing
    impaired from years of glandular fever especially Infections Mononucleosis
    Iam an artist and he asissts me with delivery schedules for my art supplies.

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