Emma's Angels Medical Care

This is Emma Mena, you may know her by her Facebook name Emma's Angels. If you follow her, you know a little about her medical journey of living with rare chromosome abnormalities. Her first diagnosis was shortly after she turned 1 year old, she was diagnosed with chromosome abnormality Ring 16, we were told she was 1 in 8 cases ever diagnosed worldwide. We were told her chances of talking and walking were 50/50. That she may be severely mentally retarded, and that there wasn't any information past the initial diagnosis of the other cases for them to give us.  We left with a diagnosis and that's about it....As we got in the elevator to leave the hospital, I cried, my then 4yr old son Tyler asked me what's wrong with Emma, "I don't know" was my answer, and it was the truth, I had no idea what Ring 16 was, I had no idea if my child would ever walk or talk, I had no idea of the medical issues we would face, and I had no idea what to do next. Left without answers and a generic explanation of something so seriously wrong with my daughter, I rushed home to search the internet. Guess what I found?......NOTHING! My baby girl had something so rare, you couldn't find information on the internet. I was in shock. I cried some more, I was angry, I was sad, I went through every emotion. After 3 days of feeling bad, I thought to myself, why...why did I feel this way, her diagnosis didn't change the way I felt about her, it didn't change her happy, high spirited, personality, or her infectious laugh. I didn’t love her any less, so why would I waste any more time being upset about it. Now that surely doesn't mean it hasn't been a rollercoaster of emotion the last 13yrs. It's been tough, Emma averaged about 4 hospital admissions (usually 10 days long each) and about 12 ER visits a year. We became regulars at Hope Children’s hospital, the nurses on the 4th floor knew us. She received occupational, developmental, physical, and speech therapy each week.  She began to learn American Sign Language because she was unable to talk, and at age 14 she is nonverbal still.  (I took an ASL class at the community college to learn it too). She has had her fair share of medical devices, a harness she wore the first 4 months of her life for her double hip dislocation and dysplasia. She wore foot and ankle orthotics, and used a walker, we were teaching her how to walkat age 3 yrs old.She used many different typed of talking devices to communicate, and drank formula I could only order from 1 pharmacy near the hospital as she had a both a milk and soy intolerance, we used a nebulizer for her daily breathing treatments of steroids and medications, and more meds than I have had my entire life. She often had pneumonia, RSV, and just about every bacterial and viral infection in her lungs and g.i. tract. She has had fevers as high as 105.9, one of them causing her to have a seizure in the back seat of my car as I watched helplessly as I drove to the ER by myself.  Emma's dad usually stayed home with her brother Tyler and we couldn’t afford for him to take off work to go with me, pay our bills and keep up with the endless medical bills. 
In the past 14 years we continued to find new things along the way, often by mistake or while treating something else.  We found cysts in her abnormally sized kidneys that continue to multiply, spots on her heart, lesions on her brain. She has seen over different 12 specialists at Hope Children's Hospital.
She has had two other surgeries so far. It's pretty serious every time Emma gets sick or is healing from surgery, her immune system plummets to a critical level, I was told by hematology it is comparable to a child on chemotherapy. She ends up with no immune system to fight off infection, or to heal. Everything hits her like a brick wall..... One example would be her surgery to remove her toncils and adnoids removed because they were causing sleep apnea. That surgery is done outpatiant and you go home same day. Emma's pediatrician thought it would be a good idea to admit her overnight to keep an eye on her know her history. We ended up staying in the hospital 10 days. That seemed to be her average number of days in the hospital for anything, recovering from injury or illness. Her tiny little body always struggled to fight things our bodies did naturally and much quicker. When I say tiny I am not only refering to when she was a baby, Emma has spent her life below the 5th percentile for both height and weight, making her look years younger than her peers. Even today she is about the size of a 10 yr old.

Recently (18 months ago) Emma was diagnosed with scoliosis. A not so rare condition for teenage girls, but of course she had the rare kind, the one in every 10, 000 cases of congenital scoliosis that made her un-braceable. We did an x-ray; her curve was at 26 degrees. We went back 9 months later, did another x-ray, it had progressed to a double curve, 40 degrees on top and 29 on the bottom.  We were then told when her curve hit 50 degrees we would need to discuss spinal surgery. Another 9 months later I took her Rush Hospital, I knew her scoliosis had progressed I could see the hump on her shoulder had grown larger, I sensed it would be time to talk surgery. I wanted a second opinion and a better doctor. I took her in to meet her new orthopedic doctor, we once again did x-rays, then we went into the office and waited for the x-rays to pop up on the screen. Before the doctor could even say anything, I knew it was bad. She progressed to 68.7 degrees on top and 39.4 on the bottom and needs her surgery soon. If her scoliosis got any worse it would start to restrict breathing, something that would cause major issues for Emma with her history of lung infections and the scar tissue left in her lungs. She also struggle to walk or stand for too long and every night tells me her back hurts. Its hard to see your child in pain and there is nothing I can do to make it stop. Her doctor and I agreed we had to move fast, every time Emma grows, her curve worsens. She is a 14yr old teen who is not done growing yet, so we know it’s only going to continue to get worse, and in Emma's case VERY fast.  We were given a pre-surgery checklist, went for a 3 1/2-hour MRI to check her spinal cord, we went to a cardiologist at Rush to check her heart.  And we met with a new neurologist (part of her surgical team) also at Rush, to review her MRI and get clearance for surgery. We got the all clear for surgery, so I scheduled it for April.  
In a weird twist of fate, being sent to the neurologist at Rush we found out Emma had another RARE chromosomal mutation called Tuberous Sclerosis. Emma is now the 1 case to have both conditions. All the things she had been diagnosed with over the years, all tied together. 14 years of unanswered questions, feeling alone, and feeling like the doctors didn't really care to learn more about Emma and her conditions because it was too rare. To meet a new doctor that spends a couple of hours with us, and he pieces it all together! Crazy! We will be following up with a new genetic specialist, and we will need to monitor her major organs the rest of her life to watch for tumors. Tuberous Sclerosis causes tumors on your major organs, and with tumors of course, comes the anxiety they can turn cancerous.
But that's all after Emma's surgery. Like I said before, we need to get this done ASAP.  She is scheduled for the 6-hour spinal surgery to install 2 rods from her T2 to her L1 sandwiching her spine with the two rods and held into place with screws into each of the vertebrae in between. This surgery can cost $200,000 plus. The bills from her last 3 visits this month came in yesterday and total $20,233. With the bills received a letter from our insurance Emma's bills exceed the ppo allowance leaving us with more out of pocket.  We are overwhelmed with worry of how we are going to pay her medical bills. How we can continue to take her to the amazing doctors we found at Rush Hospital. We have finally found a new team of doctors who all care enough to learn more about Emma, that have not hesitated to diagnose Emma, we have never received this amazing level of care and compassion. We can’t lose them now.
Asking for help is not something we wanted to do, we didn't want to ask friends and family to help us financially, but we just can't do it alone, and we owe it to Emma to get her the best doctors we can, And doctors that are interested in her unique case. 14 years of feeling brushed aside because her conditions are not common enough, is way too long!!
ALL support for Emma financial or not, big or small is appreciated more than you can imagine. And I will forever be grateful. Please help us get Emma the care she needs and deserves. If you know her, you know she will get you with her laugh, but keep you hooked with her kindness, her humor, her strength and her socially driven personality. She's pretty special, and we are so lucky to have her. Emma's dad, brother and I are better people because of everything this little girl has taught us about life. Thank You to everyone who took the time to read about Emma's journey. Thank you to the three selfless angels who encouraged me to ask for help for my baby girl. (Annon's little Nugget!)
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Jennifer Malinowski-Mena 
Tinley Park, IL
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