Wednesday April 9th 2003, At 5:47 am I first gave birth to a beautiful 5lb 2oz baby girl(Elizabeth),Then 28 minutes later another beautiful 4lb 7 oz baby girl, Virginia...Both girl’s with their own personalities,from the beginning..Big brother Schuyler, and big sister Willow(which the twins were born on Willow’s birthday) Anxiously awaited the arrival of their new fraternal twin sister’s. Virginia proved to be the more needy of the 2,she kept weird hours and nothing could keep her happy for long. With Virginia, something very different even special was going on with her. I tried not to focus too much on the differences between the twins,because any mother knows you don’t compare twins, let alone the other siblings.Well there were some differences in dealing with these, and the fact that the relationship with their father had fallen apart, Not just emotionally but physically..This proved true for the children and myself.The twin’s father was tested for Huntington’s Disease,and results showed that he was positive. And we were led to believe that this disease skips generations, and the kids would not be effected..And if they were effected it wouldn’t be noticed until adulthood….FALSE!
Sometime went on and the twins father was out of the picture,and was showing a lot of symptoms by then Virginia who was around 2 years old, had started having difficulties with speech,and muscle stiffness,balance,and anger tantrums,that just didn’t seem right..And because of the stiffness and muscle spasms the doctor decided,to test her for Rheumatoid Arthritis because it ran in my family.
And they were not able to label Virginia’s problem as being Rheumatoid Arthritis,instead they did more testing.They came up with new theories.At the age of 2 in a half,they were trying to find out if she was Bipolar,I myself am Bipolar,so they thought that was the case for her outburst. Again,they were wrong ,in 2006,she started Head Start(preschool),and the teachers noticed almost right away that Virginia struggled to retain information,(letters,numbers),even writing her name was difficult,Most times letters,numbers,etc.Were backwards and all the other problems like stiffness,muscle spasms,were becoming more of a problem…She would come downstairs on her behind,she just couldn’t handle the stairs all the time,it became painful for her to walk,and run..She would play out too easy,and always wanted to be carried when she got exhausted,which never took long…We took her to her doctor,and she sent Virginia to the neurologist.That Dr did a series of testing,which spanned over a few months,and he came up with the diagnosis of Dystonia…We were still doubtful…So,that neurologist sent us to a pediatric neurologist, 80 miles away from our home. That dr decided to do the genetic test for Huntington’s..Due to the fact her father has HD..But,that dr said it wasn’t possible cause HD does not effect children,just adults….FALSE Again!That same dr stated that HD does not effect children, so the only other thing is that your daughter, Virginia is mentally retarded…I hate that term, let alone coming from a professional I knew for a fact he was wrong. I knew something was wrong with my daughter,but that was not it!!He decided to do the test for Huntington’s, and we waited ,what seemed like years,but in reality it was a month..I got a phone call around 7 o’clock in the evening,it was the pediatric neurologist,on the other end..He then told me that Virginia definitely has Huntington’s disease…At first,I was shocked,to be getting the results over the phone..When I calmed down ,I asked him what her CAG numbers were..And his reply was where and what is that?? Here I am telling this doctor what the CAG numbers are…I then had to tell him where these numbers were located on the report..After dealing with this joke of a dr, I took Virginia, back to the original Neurologist..He then corrected her diagnosis as being Juvenile Huntington Disease, because of her CAG numbers, he then told us, a scientific guess that Virginia, would have 1-10 years to live….No cure, no slowing it down, no
treatment…..NOTHING!Three years have past, since Virginia was diagnosed and she is still struggling with the effects of this disease..We took it upon ourselves to educate everyone close to Virginia so everyone could understand what she is going through…Elizabeth, Virginia’s twin sister, started to show some stiffness, and we of course panicked,thinking she had jhd as well…So, Elizabeth was tested,and her results were negative (Thank God) she does not have the gene and never will get HD.. Some things to say about Virginia, She is the most loving,trusting,physically and emotionally, strong 7 year old I have ever known..This girl does not quit anything, she is determined to the point of being unreasonable! She is my little angel, always was and always will be. The next few years are going to be tough,and we know this and so does she..But it is hard to bring her down,even knowing where the road is leading. She fights daily to prove she isn’t losing the battle. She is Amazing,we tell her that all the time..My biggest fears are, First off losing one of my babies, secondly being robbed of seeing her, grow up and live her own life, like every mother wants for their children… We are determined to make Virginia’s life as wonderful and as happy as we possibly can. We hang onto the hope for a cure…. Even if it is too late
for our little Angel.. We want to make this the last generation to suffer through this horrible disease.. Each day gets harder to deal with but,having her with us, makes it all worth it.. Everyone, that knows and loves this child,will be losing a big part of themselves! When its her time to fly with the real angels, I hope she knows,that all of our lives are better for having known her..But all that know her, knows she will not go quietly,or without a fight.. That’s how she got the nickname, our little scrappy Angel…..that and all the courage and strength she shows on a daily basis.. Virginia, does not want to get weak,so she does pull ups in the doorway of the kitchen. She was up to doing 12 pull ups a day, now she is doing 5 or 6 on a good day. No one is safe when it comes to an argument, Virginia, does not care how old you are, if your right or wrong, she will argue, till you just give up.. My point is Virginia, is my rock, she shows more strength,and courage, at 7 years, than i have ever seen in any adult. This disease takes such a toll on the human spirit, but it does not show on her…. No one can tell if she is scared or not… And that is my biggest fear… her being afraid, her being weak…. just not being Virginia… She wants no sadness, no pity, she just wants everyone to be happy, and worry free. She is so strong, I believe that’s were I draw my strength from…. She is an endless well of courage, and strength… She brings lite to a roomful of darkness. We as parents are supposed to be called upon for strength, not the other way around..
Virginia Loves Cats Especially Her Kitty Cuddles Being A Princess Pennies and Especially Angels
I would like to thank you Jacey for giving me a reason to write this story, and being able to share my little girl”s story with everyone.
We got results from Virginia’s MRI, the MRI was ordered at that time to see if any changes appeared from jhd..At the follow up appointment he of course talks with Virginia, asking her how she has been feeling etc. He then says he would like to talk about her results, he reported that there has been no change as far as the jhd..(which we know that don’t always show)!! However he would like to order another MRI??!! He then asked Virginia if he could talk to me and if she would wait with a nurse..He then explained to me that the MRI was showing a abnormality on her pituitary, part of the brain. This news has hit us all very hard. We watch Virginia change so much already due to jhd, that even she knows. She has watched videos of herself from several years ago, and cries!! She cries cause she sees how different she is and what this dang disease has stole from her in looks, and even character!! Now she has to go through this, yet another challenge , it’s not fair!!! I’m mad as heck, not only is gin going through this , she has sisters and a brother who watch everyday!!
February 16, 2018 Needed prayers for my Virginia, taking her to the er with chest pains and having hard time breathing …. 😥😥 pray we get a decent dr that at least knows somewhat about Jhd !! 😡😡
Miss Virginia’s bucket list is..
- Fill Up Penny Jar,As Many As She Can
- To See Disney World With Her Family
- Collect Different Rocks So I Can Be A Geologist
- Meet Pink
- Swim With The Dolphins
She is a very unselfish little girl so please help us fulfill her dreams!! She lives in Pennsylvania so if you can help that’d be amazing!!: You can also donate to her medical care through her mom’s email firstname.lastname@example.org
Virginia is a warm hearted beautiful young lady.. She tries her hardest to make everyone happy, she brightens a room by just her smile and warms your hear by her little giggle. She is always happy, and is one of the most sweetest girls I know.. I am truly blessed to be able to be a part of her life ❤
– Her Cousin Alisha who’s on Ginnia’s right