Here is Erica's story:
On April 3, 2002 Erica was born 5 weeks early. She weighed 4lb 14 oz and was 19 inches long. When Erica was born she had a mottled look to her skin and when we asked the doctor about it and we were told that babies get this when they are cold. 9 years later Erica still has the mottled look to her skin especially on her arms and chest. Erica spent most of the first year of her life in and out of the hospital. Erica was diagnosed with severe reflux at 5 days old. This led us to several Endoscopies’ and Colonoscopy’s which came back with high Eosinophil levels and Mast Cells. Between the biopsies, blood work and 24 hour urine test Erica was diagnosed with Systemic Mastocytosis. Erica has been treated by Dr Castells since she was 8 months old.
At Erica’s 7yr old physical I told our pediatrician how Erica seemed to be spacing out a lot. He had told me it goes along with the age and can also be caused by her Mastocytosis. He said to keep an eye on it but he didn’t seem too worried. A few months later these spacing out episodes changed and Erica would get a huge frown on her face that could last up to a minute. The doctor sent us the next day for an EEG which showed Erica was having Left Temporal Lobe Seizures. We then saw a neurologist who tried several medications to stop the seizures but they were not working well. This is when they sent us to Children’s Hospital Boston. Dr Theoharides has become a great friend of our family over the years of dealing with Mastocytosis. Dr Theo meet us at Children’s Hospital Boston for Erica’s first appointment in hopes to help this new doctor understand the mast cells and some of the issues they can cause.
In the beginning of 2011 Erica started sleeping 15 plus hours a day. Our neurologist at Children’s suggested that we let Erica sleep as long as she needs and to not wake her up. He was hoping that Erica’s body would catch up on the sleep. This didn’t happen. Erica started sleeping 20 hours a day. After about a week of sleeping this long the doctor set up a spinal tap and a 24 hour sleep study. Dr Theo also received a sample of Erica’s spinal fluid. Erica was diagnosed with a sleep disorder called Narcolepsy and the test that Dr Theo had can came back showing severely elevated Mast Cells and Eosinophil in Erica’s Spinal fluid.
Erica has several triggers, there are also days that we have no idea what could be causing Erica’s allergic reaction and those are the hardest reactions to deal with. Erica is like a car with a bad thermostat, her body has a hard time adjusting to temperature change and she doesn’t sweat like a normal child which causes her to overheat even when the temperature isn’t hot. Spending small amounts of time (minutes) in the sun even while riding in the car in the winter can cause Erica to not feel well. Smells are a huge trigger. Something so simple as hand lotion, perfume, cleaning supplies, other people wearing after shave, deodorant, fresh cut trees, and the list can go on and on.
Stress is the number one trigger for Erica. People think of stress as being overwhelmed. They forgot that stress can be good or bad like emotions, even if they are happy emotions. There are days when clothing is a stress on Erica’s body which can lead into an allergic reaction. The hardest part is not knowing what is going to trigger Erica from hour by hour. Today she could react to something that she was able to do yesterday and then what she reacts to today she might not react to tomorrow. One of the hardest parts dealing with Erica’s Mastocytosis is we are told time and time again by some of the top doctors we are not sure what this or that means. Erica has a lot of the issues that are more common with adults with Mastocytosis then with children. We are currently waiting for some test results to come back from Stanford in California. These results will give us the answers that will lead us to our next road that we shall be traveling down.
Now, here is how I met Eric. I Run 4. What is I Run 4? It is an amazing non-profit that matches runners up with kids (and even older special needs people) who can't run. Here is how it works, you sign up yourself as a runner or as a parent of a child with special needs (physical, mental, sickness). The I Run 4 peeps then match up a runner and a child together. And so begins an amazing friendship! As a runner, I dedicate every run to praying for Erica and her mother and her family. I send her "goodies". I check on her and her family. I help promote her need for a cure for Mastocytosis. I dedicate every mile I run to the sweetest, most deserving kid I know.. Erica!
We keep in touch via facebook. You can either communicate on the I Run 4 facebook page or on personal pages. I usually take a pic making a goofy face and add the mileage in and put it on her mom's facebook wall for her to see.
I am currently running to Erica's house. Well, virtually... we are 1,067 miles apart. Erica lives near Boston, Massachusetts. I live near Atlanta. So every run this year has come off our total. I have 541 miles left to go before I get to her house! Erica really wants me to run that last mile right up to her front door! I am going to see what I can do about that ;)
I get lots of race goodies from all the races I take part in. Bracelets, headbands, backpacks... all sorts of things. I also win medals and certificates. I love to send Erica my race swag! She loves it too :)
Race swag on her wall!
Opening one of her packages from me!
I like to spoil her a little too and send her other fun stuff in the mail, like her favorite.. One Direction and drawing stuff. This next pic was for her birthday... her mom made her wait for the actual day before she opened it. As you can see she was not happy!!
I put Erica's name ALL OVER me for races! I also take pictures of all the things I see while I am running.... horses, deer, goats...
Another special person I have met through this is Erica's mother- Kolleen. Words can't describe what an amazing woman this is. She spends every day taking care of this awesome daughter, as well as two other daughters! One of Erica's sisters also has medical issues and I don't know how Kolleen does all she does. Kolleen herself has been battling major health problems as well as a host of other trails and tribulations. I spend just as much time praying for Erica's precious mother as I do her.
The I Run 4 community is amazing. I encourage you visit their website and think about signing up yourself or your child. The website is: www.whoirun4.com/
The facebook page for I Run 4 can be found here: www.facebook.com/groups/irunformichael
Erica has her own special website as well: www.ericaswalkforacure.com/
1 comment:
Beautiful young lady!!! Loved this post! <3
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