Cameron and Alexia
14 year old Angel
Cameron started showing symptoms at 4. His father is in a nursing home and he is 41. He has 5 siblings including a twin sister Alexia, both born on Sept 1, 2001. Cameron passed away on Nov 24, 2015. Alexia is still fighting.
In January 2018, Alexia (Cameron’s twin) was diagnosed with JHD. She is 16, my heart is broken , I’m having such a hard time just writing this as if writing it will make it truer. Her CAG is 69 and among many other symptoms (mostly mental) she has started having focal seizures. This scares me for obvious reasons but also because Alexia was born intellectually disabled. So I’m so scared that that will be a factor in how quickly she loses skills. I cant believe I am here again.. She had a 24 hour eeg.
He loved Tom and Jerry and Scooby Doo, Spongebob, He loved playing Angry Birds and Monkey Quest On the IPad, His Favorite Movies Were Over the Hedge, Ice Age, and he Loved, Ice Cream Sundaes! Blue was his favorite. He liked Red too.
Her Favorite Color Is Pink. She likes princesses, shimmer and shine, spongebob, Just Dance on the Wii.. She loves to dance she also loves to sing and listen to music She loves to go to school, she is in Drama, piano class and music therapy as well as special needs sports (basketball and baseball)
4 Replies to “Cameron (Cami) and Alexia”
It is hard enough,when a child is born with mental challenges,and to be genetically vulnerable to a
neurodegenerative disease like Juvenile Huntingtons Disease is way over the top emotionally for their
loved one’s to watch on a daily basis,why does mother nature have to be so cruel?
We see this with Down’s Syndrome all the time,I have two cousins with
Trisomy 21,and one of the most horrible aspects is they are not only born with physical issues like
heart murmurs,a propensity for various types of cancer,they are also born with high level of
toxic glutamine that causes tangled webs of plaque formation that causes them to be much more
vulnerable to early onset Alzheimers Disease .so while adults who do not have trisomy 21,22,23,and 18 chromosomadisorders, if unfortunate enough will not develop Alzheimers Disease until they have
reached their later geriatric years.
Alexia’s intellectual disability accompanied by Juvenile Huntingtons Disease is also a
double whammy how catastrophically cruel can mother nature be?
Time is of an essence,our worl’s neurobiological researchers and genetic biologisits have to find a
way to silence this horrible trinucleotide repeat,that destroys the lives of families who are diagnosed
with the trinucleotide repeated codon Cytosine,adenine and glutamine,so everyone whose born into a family with the mutant huntingtons gene mutation can be cured or proteoted from ever developing this disease.
Its hard enough to be born with a severe form of neurological impairment as Alexia was riddled with,
but its a double whammy that she also developed Juvenile Huntingtons Disease.
People with all the five forms of Down’s Syndrome are born vulnerable to early onset Alzheimers
Disease,I know I have two cousins who have trisomy 21,and both Mitzraim and Morgan who are not siblings,were both born with the propensity for amyloid plaque formation,vulnerabilities to various forms of leukemia and boom,as they age into their late twenties and thirties,they most likely will develop Early Onset Alzheimers Disease.
I just read your story. I have twin grandsons with JHD one has passed te other is fighting. I feel your pain and pray for a cure, if not for us, to save other twins from this agony