Struggles With A Rare Disease

A lot has happened over the last month and lately, I have been extremely exhausted and find myself wanting to crawl in bed, get under the covers and stay there for as long as possible.  I am a warrior for this disease and for all those suffering from it. Hell, my tiny little foundation has raised and contributed over a million dollars in our fight against Wolfram and we are going to a clinical trial on a drug that “could” stop the progression of this nasty disease. 

I can handle this aspect of the disease because I feel, in a way, I can control the outcome to help my daughter and others like her. One challenging fact is the outcome will be dictated by the amount of money we continue to raise. I am hopeful though that many others will see the vision and join our fight.

As each day passes, I can not control the health of my beautiful Raquel. I have noticed how sick my child really is, and I think this is taking a major toll on me personally, and I am really struggling with it.

I have four unbelievable children, yet one suffers tremendously from a disease that has no CURE.  I witness my other daughters and son maturing, exploring and growing like they should be. They have tons of friends, sleepovers and are enjoying life the way they should be at their age. Yet I watch my 11 year-old struggle each and every day. Perhaps I should also acknowledge in my journey alongside her, I am also struggling.

I had a great childhood, a secure childhood with fabulous parents who taught me wrong from right and how to be a good person. I was also a healthy kid and so were my siblings.  I believe that when I met the man of my dreams and decided to have kids that I would provide a great childhood and life for my kids the way my parents Merry and Jack Snow had provided me.  Now in retrospect, that did not work out the way that I thought it would.

Raquel has missed more school days than she has attended this year.  She seems to be sick all the time with headaches, bladder issues, high blood sugar, stomachaches, exhaustion. The list goes on and on. My heart aches for this child of mine who suffers so much, although I am not sure if Raquel sees it the same way.  I witness her inability to be a normal 6th grader. If her blood sugars are high or low, she will go to the nurse’s office, sometimes she will be in the nurse’s office all day. 

She misses out on her classes, teachers, friends and simply experiencing school like all the other kids. She has a special ed teacher accompany her around, so it is like having a grown up with you all day long. I wonder how she is perceived by her peers. Raquel called a few friends of hers this past Halloween to see if she could trick or treat with them. Everyone said they already had plans. They could’ve easily invited her along, but did not.  Then to see these same friends come to my door and ask for candy broke my heart. 

I have to learn to accept what I cannot change. As a mother knowing that your child is going blind and most likely will not make it to her 30th birthday, I wish for her the most joyful childhood memories, as they are the ones that she will have with her forever. 

Sometimes I think even her own siblings do not get what she is going through. So I am not mad at her friends or her siblings, I am mad at the situation at hand, and I am frustrated that I cannot raise the amount of money quick enough to make life better for her. 

But I am hopeful for the future, what we’re doing with the Snow Foundation and the possibilities that are available for Raquel and others like her. I hope for the day that I can give Raquel the world that I had dreamt of giving her the day she was born.

1 reply
  1. Vicky Pagan
    Vicky Pagan says:

    I am so sorry you are feeling sad and frustrated. My son, Nick has gone through similar difficulties in his school days. There were many times that he was mistreated by his peers to a point that I wanted to go to school and reprimand, and discipline them myself. Although, Nick was a second degree black belt in Taikwondo and was capable of defending himself, he would not. He would cry instead, which did not help his social standing with his peers. He also had an aide with him until he was 12 and we moved to Florida. He refused any assistance in his new school, because of the repricussions that came with it, and tried to hide his disabilities the best he could in his new school. Middleschool turned out to be fun for Nick after he finally kicked some bully in the side of his face in the cafeteria and won some respect after the news traveled quickly. Highschool wasn’t as easy. It’s all about dating, looking good and being popular. Nick had very few friends and people were not nice to him. He had a miserable four years and there was nothing I could do to fix it. It was a very difficult time. College was a different and possitive story. He made good friends, was liked and respected and most of all… Happy! He is finally finished with school, has a bachelor’s degree and now struggling in the workforce. Life gets better and worse for these kids as they grow into adulthood. It has not been an easy life for Nick or us as parents. It’s HARD having a child with so many disabilities but he is our only child and I will be by his side, facing his struggles, for as long as he is on this earth. Nick is 24 now so according to statistics, without a cure, he has six more years. That’s not a long time. I think about that every single day. As a Mom, I am frightened, and it takes a toll on my life, my happiness and my health but I continue one day at a time and try to make Nick’s life the best that I can. That’s all you can do.

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