There is such a supportive family within the group NW JRA children & their parents, that I was happy to catch up with those new friends as well & what made my day was to hear about Bella, the grand marshall & her progress as she just started taking a daily shot of Kineret (a TNF blocker like Charlotte's remicade).
Its been a miracle drug for Bella who is systemic (see older posts for Bella's story) & for her mom to tell me how Bella's now able to ride a bike, go out & play & isnt as tired anymore (arthritis wipes your bodies energy!), was SOOOO WONDERFUL to hear. Bella's mom's face LIT up telling me & I was sooooo happy for her! I snapped pictures of Bella, who was just the most proud girl walking today & it makes you SOOO happy to see the LIFE restored to young little bodies & spirits.
Our sweet friends John & Kay, brought their soccer team that they coach. They all wore their jerseys & they were huddled in a circle before the start of the race getting a pep talk from their coach. I took Charlotte over to thank them & Kay introduced us, "And this is Charlotte, this is the little girl you are running for today."
Strangers. Children & their parents. And they are running for Charlotte.
I wanted to thank them, & share with them why they have touched me & my family. I wanted to tell them a little bit about Charlotte so they could understand WHY their support is such a big deal.
But being my mother's daughter, I could only get out "Thank you so much!" And then I probably scared them because I took Charlotte's leg & showed them her bending it at the knee & said, "she used to not be able to do that. She's now on two medicines that help. ....(choke...) Thank you!"
I sent Kay & Coach John the following email to share with their team, this is what I REALLY wanted to say:
Dear Coach John’s Soccer girls & families,
Thank you so much for coming out today & walking & running to support children that have Arthritis!! I was so moved by your being there, I wanted to share more with you about Charlotte & why you touched my heart, but my words got choked up in emotion. I am so appreciative for your support & your generosity to your community. You are not only athletes, you are tremendous community leaders!
There are 300,000 children in the United States with arthritis - some of them can’t play soccer & can’t run or walk the 3 miles you did today. Your support today will go to studies so that Charlotte can live a happy, active life as she gets older!
Charlotte is 2 ½ & last fall, just as Charlotte turned two, she started limping. We though she might have twisted her knee or ankle. Then one morning, her knee got very swollen & huge & she cried if you didn’t carry her, she couldn’t stand on her legs & she didn’t want to walk at all. That’s when we found out she has Juvenile Rheumatoid Arthritis which is an autoimmune disease.
For Charlotte, her arthritis has also gone to her eyes (called uveitis). This doesn’t happen to all children who have arthritis, so there isn’t A LOT of information out there on what to do about it. We took her to see a special eye dr. in Boston to make sure that we are taking the right medicines in order to help her eyes get under “control” & not cause any damage to her eyes so she can see clearly now & forever.
To keep Charlotte healthy, she gets a weekly shot (given by her mom & dad) & monthly she goes to the hospital to have an IV & she hangs out there for a whole day as the medicine drips in through a needle in her arm. She will do this for 2 more years just to get rid of the arthritis in her eyes.
Your running today holds a soft spot in my heart because they are doing more & more studies & work on children with arthritis in the eyes (uveitis) so that children do not suffer from this in the future. Thank you again! I am humbly grateful for your caring & your support! Good luck to your team & your season! HAVE FUN!
Erika & Charlotte (“Tottie”)