Little SuperHero (An Article for Hailey)

Today we reach out to our followers. This is not music related, but is still important. A family member of ours is in need of help and we want to help spread awareness to help fight this nasty condition known as Juvenile Idiopathic Arthritis.

Meet our 4 year old Superhero Hailey Smith. Her mom, Amanda, shares her journey from birth to now.

Hailey was born in September 2010 beautiful and strong. Right away she had “colds” even in her first week of life followed by allergies and asthma. Hailey was a happy baby though. Sleeping mostly through the night and always smiling. It was the little things I didn’t know to look out for. The little things that make all the more sense now.

She was constantly sick even though she stayed at home her first nine months. Once starting daycare it got worse. The doctors said she just “had the flu”… that seemed to never go away. We know now that these mini fevers were more than likely flares brought on by the more activity she was doing while growing and starting daycare. Again, she was a happy baby. Didn't complain too much even with the higher fevers. Momma’s strong baby.

In November, 2012 Hailey all of a sudden developed a severely swollen knee. It started in the middle of the night with a fever and rash. I felt her knee and thought there was fluid in it. I got her up to take her to the ER and she couldn't walk. Even had an accident because she couldn't move from the couch and was too scared to say she needed help. We rushed her to the ER thinking maybe she dislocated it in her sleep with how much she was screaming. Of course, by the time we got there the fever was down and the swelling was down a lot too. We were sent home to follow up with our doctor. For months we went back and forth to the ER, doctor and x-ray labs. The doctors wouldn't give me the time of day. One actually said to the nurse in front of me “Tell mom we need to save these public aid appointments to emergencies only from now on.” (UGH) That was my final straw to get a different opinion. Thankfully another nurse overheard and knew of Hailey’s case. She suggested seeing a Rheumatologist. After circles and circles of public aid nonsense and different doctors and countless episodes of what we now know as flares in her knees, ankles, toes, hands, and jaw… We FINALLY got a referral to a great Rheumy. Right away she noticed the signs and symptoms. She diagnosed Hailey with JIA in April, 2013 during our second visit.

We’ve been lucky so far. Naproxen and an antacid was all she needed to stay active with a lot of adjustments to dosage. She’d go through her flares with such strength it amazed me. She experienced a full body flare in our first winter (2013). Days where she couldn't walk, days of sleeping, no eating, and all that accompanies. It was the scariest time yet she still kept smiling and telling me she loved me. She’d pray every night, not to feel better, but thanked God for all she had. Her friends, family and blankie are always first on her never ending list.

Since the winter 2013, I had my active little angel. Her flares were mild during the summer. Mostly only happening in the night and lasting half a day with mild fevers. Only missed a handful of days of daycare. She was full of life, telling me she wants to be a vet when she gets older. She even felt good enough to play with the other kids on the playground and made FRIENDS!

We see our Rheumy every three months for blood work. At our last visit, her fourth birthday in September, we only needed to report very few flares. We talked about possibly reducing the dosage or going to as needed if this good luck continued. Remission. I tried not to get my hopes up. I really did. But every mom wants their baby healthy. And reading all these other stories of infusions and chemo… I couldn't bear think this disease could take her the other way. I didn't even tell her, or our family, that it might be a possibility to be off the meds soon. I’m glad I didn't.

Since then her flares are worse. It seems to last longer and longer. They’re different than before too. Overall soreness is back in her knees, ankles, toes, hands, and jaw. Still only swelling in her knee though. I will need to call the doctor this week to adjust her dosages again. I have a feeling she is at the max for her weight and we will need to try another med soon. She’s only 32 lbs. at 4 years old. There aren't many options.

We need your help. We are raising money for these small superheros, and for Hailey to be able to attend Juvenile Arthritis Camp next summer.

love Hailey Melissa & Amanda Smith