Remembering: The Dai Of Hope

DaiOfHope (2)Back in 2011 there was a special event for an even more special little girl named Adaila. Adaila has a rare health condition and it was laid on my heart to organize an event just for this little angel.

Her dad, one of the greatest men I know, was very helpful in explaining Adaila’s condition. I wanted to share her dad’s letter and I will be doing a followup as to how Adaila is doing today.

In the mean-while, please enjoy these memories and I ask that you continue to prayer for Adaila and her family.

Letter from dad:

 

 

A Letter From From Dad 

CIMG0392Hello. I’m Dustin Roach and my wife is Megan. The kiddo that Jim Stine is organizing the benefit concert for is my daughter. Her name is Adaila MaKenna Roach. She is a beautiful, caring, social, vivacious and most importantly brave five and a half year old. She looks like her dad and has her mother’s attitude.

For both my wife and I, our lifelong dream growing up was to become parents. We now are blessed with two beautiful daughters and an adorable almost two year old foster son. We are passionate about helping kids in need and that for us has been inspired by our oldest daughter.

Adaila was born into this world on July 7, 2005. She was delivered with minimal complications. Initially, the only concern that the doctors had was her low birth weight, but the doctors involved in the delivery thought, “she’s little, but she’ll be fine.” We were okay with that as well.

In the first few months of Adaila’s life, she started off with frequent bouts of colds, flus, and pneumonias. We had concerns for how often she was sick, but the doctors initially assured us that babies get sick more frequently during their first winter. We were also cautious about her weight. She was in the zero percentile at birth and we began to notice a trend that she wasn’t picking up weight as expected. This was alarming to both the doctors and us. As time progressed, she was eventually diagnosed with failure to thrive. When Adaila was around five months old, we noticed that she wasn’t hitting her developmental milestones, such as sitting independently. This threw up somewhat of a red flag.

At the end of March 2006 when Adaila was 8 months old, she was hospitalized at Community North Hospital with what was thought to be a severe pneumonia. While there, her rapid breathing and retractions got to the point that I was scared out of my mind for her health. I felt that the situation had become life or death and so I demanded for her to be transferred to Riley Children’s Hospital. The doctor at Community North whole-heartedly agreed that they had done all they could at their facility and that it was essential that she get more specialized care. At that point, she was transferred by ambulance to Riley.

Upon our arrival they sent her straight into what we now refer to as “the room.” It’s the one in the corner right in front of the nurses’ desk with the big lights and such. Within minutes of being there, a C.A.R.T. team was dispatched and a code was played over the intercom. Several doctors swarmed into the room and, to make a long story short, told us they had to intubate her. She ended up being on “life support” for weeks and in a medically induced coma. During this time, we learned that it wasn’t just pneumonia we were dealing with, but rather a respiratory infection known as RSV (Respiratory Syncytial Virus). Since she was in the hospital for an extended amount of time, there came a point when I had to go to work. Working while my baby was hooked up to a tube that was breathing for her was one of the hardest things I have ever had to do. I specifically recall a day when I was at work and I got a call from my wife who was sobbing, hardly able to speak. I was in panic. She eventually managed to mutter between tears, “Dus, you need to get here as soon as possible. They think we’re losing her.” Those words from my wife will echo in my head forever. What seemed like a parent’s worst nightmare was unfolding before our very eyes and quickly. God thankfully spared my little hero. We ended up in the ICU for about three weeks then on the regular floor for a while. After many heartfelt prayers, God answered and brought Adaila back to what we call “good health.” I tell you this story because this is basically where it all started for our family. After that point, numerous specialists became involved in her care.

Eventually, over the next few years, we found out that Dai (that’s what we call her) suffers from a rare immune deficiency called hypogammaglobulinemia, suspected Mitochondrial disorder, Ketotic hypoglycemia, a mannose binding lectin defiency, a carntine defiency, and lastly plain old asthma. In addition to the immune deficiency, they have recently found that of the parts of her immune system that did work are showing signs of new defiencies as well. This may eventually bring up a new kind of diagnosis for the immune deficiency.

Adaila has to see numerous specialists on a regular basis. Sometimes, this becomes time consuming trying to juggle all of the appointments. In addition, Adaila has numerous hospital stays yearly. In 2010 I think she had 7 or 8. These aren’t ordinary “we’ll let you go in the morning” overnight hospital stays. We are usually inpatient for a minimum of four days – most of the time even longer.

In order to treat the immune deficiency, Adaila has had to get IVIG infusion treatments every three weeks since she was 18 months old. This treatment consists of getting an IV started and sitting in the Hematology/Oncology ward for about four hours while antibodies are slowly dripped into her system. She also has to frequently be put on a very expensive antibiotic called Zyvox. This antibiotic is used to treat MRSA as she is extremely susceptible to that condition and she’s allergic to the other antibiotics that could work.

Because of the suspected Mitochondrial disorder, every other year she has to have a heart echo, a liver function screening, and a special eye exam to make sure the muscle disorder isn’t affecting those muscles. Since a Mitochondrial disorder is a progressive condition, we have to have these tests done because eventually, as she ages, all of her muscles (including her organs) will be affected. It’s just a matter of how long it takes to progress. The disorder affects people in different ways; every case is different. As science advances and more tests become available, Adaila will have to endure more testing. She already has skin and muscle samples stored for any future tests that may arise.

Due to her failure to thrive as an infant and now her Ketotic Hypoglycemia, she has a g-tube implanted in her stomach. We use this only when she gets ‘sick’ as she becomes Ketotic and dehydrated very quickly. We recently purchased a feeding pump which has become a life saver for Megan and me. It slowly drips liquids containing high amounts of sugar and calories into her stomach to counteract her loss of appetite and vomiting and when she’s sick.

She also wears braces on her feet to help her balance. We were told that she should wear them most of the time, but that on occasion she should have some “off time.” They certainly aren’t her favorite thing to wear and she’s always excited when she gets a day without them. Plus, she likes to dress fancy and she just can’t wear braces with dress shoes. We just recently started going to Shriner’s Children’s Hospital in Lexington, Kentucky where they are going to be able to help in this orthopedic area (braces) as well as monitoring her scoliosis.

Another thing we do to help Adaila with her muscle strength is take her to Edelweiss Equine Assisted Therapy during the spring, summer, and fall where she participates in hippotherapy. This place is amazing and is great for kids. The special needs kids (and adults) have so much fun riding horses and doing physical therapy at the same time. It has been a great outlet for Adaila.

We do have insurance and I thank God for what insurance we do have. It is actually a fairly decent plan compared to others I’ve seen. However, there are many procedures denied or simply not covered under our plan. The way the insurance company figures our out-of-pocket max is weird. It seems like we never hit it, even though we do. In addition, our plan has different coverage levels when it comes to medical needs. For instance, major medical has a different out-of-pocket max as well as family deductibles. Then, our pharmacy benefit has its own limits and maximums. In addition, physicians at Riley are considered out-of-network and their bills often come through denied; if they happen to be paid, they are paid at a much lower level. Needless to say, we end up owing a bunch of money to a bunch of places and/or people after it is all said and done. We try our best to keep up; with the help of our family and very good friends, we have somehow managed to stay treading above water. Even with us being blessed with such loving people in our lives who are there for us in many ways on a regular basis, we still owe money. With the conditions that Adaila has and the frequency with which she is hospitalized, we probably always will.

We truly are blessed in so many ways with people who are there to support us. Whether it be praying for us, cooking meals while in the hospital, coming up just to sit and visit, giving to us financially, randomly calling to see how we are doing, or even coming to clean our house to take some burden off of us, the list is just endless. In addition, Megan’s parents usually end up with at least a kid or two staying the night while we’re in the hospital. We are so incredibly thankful for all of the things that have been, and still are, done for us, including this benefit Jim is putting together. It will help tremendously.

To give you an idea of what it’s like for me, just today I got a call from the specialty pharmacy where we get Adaila’s infusion medicine saying that they needed $285 today in order for them to ship this medicine which is critical to her health. The financial burden, the battle with insurance, and the back-and-forth with bill collectors about what we actually owe – it all seems never ending. Especially with the start of a new year and more bills already rolling in adding to the stack of what we already owe. We have learned to concentrate on Adaila and NOT the financial aspect of it. We know that somehow, someway the money part of it will work itself out; what’s most important is taking care of our daughter’s needs!

I’m not sure what the future holds for Adaila, and honestly I get scared sometimes to think about it. Even after over four years of dealing with this, I’m still a parent who is somewhat in denial – I can admit that. I always hope and pray daily, that one day she can lead a normal life. I’m not so sure that’s going to happen, but it’s my constant prayer. Looking at Dai you would not be able to tell anything is wrong with her, minus the occasional and sometimes frequent falls and stumbles. She has overcome more obstacles in her little life than most adults ever have and through it all, she continues to smile. That’s the best part! Her smile will melt a heart and bring hope to many.

Thank you very much for your consideration in helping my family! I hope God blesses each and every one of you more than you have blessed us!

Sincerely,

Dustin Roach

 

 

 

 The performers:

1heart Poster1Heart

fire escape poster finalFire Escape Youth Ministry

Jeffrey's Poster OfficialJeffery Pitts

Messengers BandMessengers B_A_N_D

Poster officialOccasional Blues Band

Publication1Paradox Shift

SD poster threeSore Dove

Posters and Flyers:

Dai save the date image LARGE

Benefit Concert 2

Benefit Concert Poster 1

Dai of Hope BENEVOLENCE re-print copy

Dai of Hope blue poster copy

 

Photo Gallery: