Support My Journey
On Sunday, June 10, my family and I are participating in Walk to Fight Arthritis. I am walking and raising donations to support nearly 4.5 million Canadians who live with the pain and disability caused by arthritis, including myself, an 7 year old girl who has had this disease since I was 18 months old! Please consider donating to me and supporting this important cause.
My Story
I have had arthritis since I was 18 months old, maybe earlier, that is just when they discovered what was wrong with my knee! I used to walk around with a very straight leg, I couldn't bend my knee at all. By the time I met the doctors, I had arthritis in my knee and ankle. I started on a drug at that time. It didn't work. My joints got bigger, hotter and more sore. I have had 3 operations where they put steroids right into my joints. I was just 2 years old when I had my first operation. It didn't work either. I had a 10 joint flare up, my knees, both ankles, my toes and fingers were affected. It was hard to walk, or move at all. I started steroids and it worked for a while, but my knees were still an issue. I was started on a chemo drug and another drug that suppress my immune system. To this day I'm still on those drugs.
I was in remission for nearly 3 years, however at the end of Kindergarten, I flared again. My knee went HUGE over night, and I was unable to move or play like a 6 year old should. I could not get out of bed at night to go to the washroom, my knee and ankles wouldn’t work. I missed a lot of my summer, waiting for an operating room. I was not able to ride my bike, or even play easily on the playground. I did get in for steroids again the last couple of weeks of summer, and I do feel better today. I am back on all of the drugs that I was weaning off of, but that is ok, because I can play and run again.
Last year Jessica and her sister Lindsay walked for arthritis on their 7th birthday, and raised money at their birthday party to donate! Her younger sister Brooklynn, also raised money to help her sister on her 5th birthday, and donated over $200 to the arthritis society!
Of course this was written by Jessica's mommy. I also want to share with you how arthritis affects the entire family!
Kids Get Arthritis Too - read about Jessica's successes and struggles at
http://kidsgetarthritis.wordpress.com/
Mommy's Thoughts: From a mom's point of view, there is nothing worse than seeing your child suffer. That said it has also been amazing seeing how a child handles pain. They are a lot stronger and braver than we adults are. They don't complain very often, they just deal with it. They don't let it slow them down, they still want to play and be a kid. She truly amazes me every single day. You would never know to meet her that she has arthritis. She is a normal kid who has to take a lot of medications and who has a weak immune system. Funny though, she is usually the last one to catch anything. However each time she has a fever, we have to go to the Children's Hospital and she has to poked, tested and observed for a long time.
I used to feel that I’ve cheated my children out of many things, like all of the fun classes that kids take, because we thought that Jessica would get sick. We`ve missed birthday parties, Christmas gatherings and many other things because someone attending was ill so we couldn`t go, but she doesn't feel like she has missed out on things. She treats each event and activity that we get to do as a very special event! Now that she is in Grade 1, we’ve been thrown into an environment where we really don’t have control over what she is exposed to, and have learned to let go and let her live a bit more. We’ve been fortunate that we’ve not run into anything horrible, and that she does have great hand washing skills, but whenever something scary comes along I really worry. We pulled her out of kindergarten during the H1N1 scare last year, until her vaccine kicked in.
Jessica is so brave, and has gone through so much already in her little lifetime. She gets blood tests done every six weeks, and she doesn't even cry! She lets her teddy bear cry for her so she doesn't. And, every time that she gets her needle, they give her a sticker and she ALWAYS asks to get one for Lindsay, her twin sister. She is always thinking of everyone else. If someone is ill or hurt, Jessica is there to the rescue, she has so much empathy for anyone who is in pain.
Every time that Jessica has a ‘hurt’ anywhere, I always get anxious. She isn’t able to tell me exactly where things hurt a lot of the time, so I check everything for heat, swelling, loss of motion! We were all reminded of the intense and sudden havoc that arthritis throws at a family. It appears so silently and quick, and then it attacks and rears it’s ugly face all at once. It has been beyond painful to see her flare and to miss out on things that other kids take for granted, like riding a bike and walking with ease. The hardest thing is that you cannot take the hurt away. As a mom, you always want to take the hurt away, and you cannot.
When she flared at 18 months, it was very different than when she flared at 6 years old. I cannot express how unfair it is to see a child who cannot speak suffer through pain that most of us have never experienced in our life time! They cannot tell you how or where it hurts, they cannot understand your attempts at explaining it. I also always wonder what these amazing drugs are doing to her body besides stopping the arthritis. I live daily wondering if they are damaging other vital body functions that she needs to live the best life that she can. This is why I’m always waiting for the day when she is off of all of her medications! I am so grateful that she did have 2 years of no arthritis, and was devastated when it returned in kindergarten. Our doctors have been great and she seems to be under control again, and I am so very thankful.
I also do feel very grateful that of many of the diseases that are out there, that arthritis can be controlled medically and that Jessica does have a very normal life. I know that there is a lot of other diseases with much worse outcomes! I hope another child NEVER has to go through what my amazing baby has. Please donate what you can, even a $1! Everything helps and you will never know how much it means to our family, and many others like ours!
Daddy's Thoughts: Many months after learning that my Daughter Jessica had Juvenile Rheumatoid Arthritis, I still found myself struggling with a helpless feeling and thinking that it was so unfair that she has to deal with something like this at such a young age. I felt great sadness and concern for her well-being. Early on, it was unknown if she was going to be able to recover to the point of being able to walk normally. The question “Is she going to get better?” was very much in my thoughts. She still has to battle tightness in her legs and calves – especially when she grows – but I have a tempered optimism that she has the disease under control. Looking back on what Jessica has gone through, I feel a great sense of pride in knowing that she has fought this terrible disease with such strength and courage. Both are traits that will serve her well for the rest of her life in everything that she does.
Gramma's Thoughts: As a grandmother, I see Jessica's disease more through the eyes of her mother than in a direct way. I try not to think of it to be honest, because the feelings that come over you when you do have to face it on occasion are overwhelming and paralyzing. When I see the way my daughter handles her situation, my heart fills with love at her courage and conviction that her daughter will not be held back by this disease. I know my granddaughter is in the best of hands and I know that if there is a way for this disease to be beaten, her mother will be there at the forefront to ensure that her daughter has every opportunity in life.
I do know that every hardship in life makes us stronger and teaches us something. Jessica is a very sensitive, nurturing, caring and empathetic little girl. I think to some degree that she is this way because of the disease she has had to overcome. - Gramma
Thank you Supporters!
Thank you so much for your generosity and hopes for an arthritis free future for all! Dream big everyone, we can fight this disease!
"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead