Hailey’s Wish is a non-profit organization founded in 2006 in honor of Hailey Reese Cavlovic, a beautiful 16 month old child who died from Alpers Syndrome, a fatal mitochondrial disease.
With your support we will;
- Fund research to advance treatments for children with mitochondrial diseases.
- Educate the medical community and public to promote early diagnosis and a better understanding of these complex diseases, which are nearly as common as childhood cancer.
- Promote the sharing of information between the medical team and families to enhance the continuity and standard of care for these children.
We are driven by the belief that through research and education we can work to assure all children an early diagnosis and a better quality of life.
Hailey was born a beautiful, healthy baby on November 25, 2004. She was a perfect newborn and melted all of our hearts immediately. We were so thrilled and proud to be parents. Everyone fell in love with her big blue eyes and chubby little cheeks.
Mid April of 2005, when Hailey was about 5 months old, we had some trouble arousing her. She seemed extra sleepy and lethargic so we took her to the Emergency Room. The ER Doctor ran some standard blood tests which showed she had an infection. She was treated with antibiotics and returned to normal in a day or so. A week later Hailey woke up lethargic again. Again, we rushed to the Emergency Room expecting her to have another infection. The Doctors did not find any sign of infection and suggested she may have a viral infection that would just run its course. After discussing our concerns with Hailey’s pediatrician we were referred to a Neurologist who examined Hailey and scheduled an EEG. He told us she was perfectly healthy and considered us to be over-anxious parents.
It wasn’t until late August when Hailey was 9 months old she had another lethargic episode. We took Hailey to the ER and they did not find anything wrong with her. The only thing that Mike and I knew was that something was not right with our little girl and we felt like they were missing something. After discussing Hailey’s symptoms with her pediatrician we decided to test her blood sugar after she had fasted overnight. Hailey’s fasting blood sugar came back a 44, which is very low. Hailey was admitted to the hospital to find out why she was hypoglycemic. Hypoglycemia sounded like a fairly common problem. At the hospital Hailey was seen by both a Pediatric Endocrinologist and a Metabolic Specialist. We started to feed Hailey an extra bottle during the night to make sure her blood sugar did not drop. We also were given a glucometer to check her blood sugar level throughout the day. After extensive testing Hailey was diagnosed with hypocortisolism. It was said that her body’s natural Cortisol level was low and not kicking in to regulate the blood sugar level when it began to drop. The treatment for this was fairly simple – we just gave Hailey Cortisol in a liquid form 3 times a day to replace what her body wasn’t making. Hailey’s endocrinologist told us that Cortisol is all she needed to keep a healthy blood sugar level and advised us to stop feeding her in the middle of the night. The first night we skipped her 2am feeding Hailey woke up with a 30 blood sugar. We did not understand why she would have a low blood sugar when the Doctor had said the Cortisol would protect her. We told her endocrinologist what happened and resumed the 2am feedings until we could figure out what was happening.
The next day, we had Hailey’s 1-yr. birthday party. She had a wonderful time and was acting completely normal. At bedtime Hailey made a funny cough sound. We picked her up to check on her and she did not look well. After a moment she vomited and had a strange blank look on her face. She vomited a second time and began to cry. We checked her blood sugar and it was fine. We thought maybe she was getting her first flu. We took her to the Emergency Room. When we got to the ER my husband rushed Hailey right up to the window to have her seen right away. They decided to admit Hailey to the PICU where as soon as we got her into the unit she almost completely stopped breathing, had a seizure and became hypothermic. She was put on a ventilator and stabilized. The next day Hailey had an MRI which showed damage/swelling in the Occipital region of her brain which controls vision. The Doctors best explanation was that damage caused to the brain over time from hypoglycemia had caused this episode. Hailey was not considered to be in a coma, but it was close enough. It took weeks before she woke up and had any kind of purposeful movements. When she was awake enough to be evaluated we found out that Hailey was blind. A repeat MRI showed that the swelling in the Occipital region of her brain had resolved and everything looked normal. We were told that Hailey would regain her sight over time and we started vision therapy with an Optometrist. Hailey’s metabolic specialist thought that she might have a rare liver disease called Glycogen Storage Disease, Type 0. She met a lot of the criteria, but it wasn’t 100%. A DNA blood test came back showing she did not have GSD – 0, but we were told that other kids had been diagnosed with it despite the blood test coming back negative. One option was to do a liver biopsy to check for Glycogen Storage Diseases, but we decided to wait and only put her through surgery as a last resort. Other than Hailey’s vision she was acting perfectly normal. She was happy and growing steadily. She advanced in learning new words and could point to her ears, nose, and belly button like a pro. Over time it appeared that Hailey was beginning to see again. She could at least follow an object with her eyes when we moved in back and forth in front of her.
Late January, (Hailey was 14 months old) we were getting Hailey ready for bed and trying to feed her a bottle. Hailey just wasn’t acting like herself. Mike and I sat her up and watched her for a few minutes. I was just overwhelmed with the feeling that something wasn’t right. We called 911. When help arrived we were told that her oxygen saturation was lower than it should be and her lips were beginning to look blue. In the ER her breathing was monitored for a short time and she ended up being intubated. Unfortunately, nothing significant stood out to be the source of her condition. Neither GSD-0 nor Hypocortisolism should cause breathing or neurological issues. She was admitted to the ICU and the next day she was acting normally and was taken off of the ventilator. We just didn’t know what to think and neither did her team of specialists. We decided to go ahead and schedule the biopsies of her liver, skin and muscle. Her liver was being tested for Glycogen Storage Diseases, her skin was tested for fatty acid oxidation defects, and her muscle was being tested for mitochondrial disease. When Hailey came out of recovery and started to wake up from her anesthesia she seemed fine except she was a little shaky. She had tremors that weren’t severe, but they were noticeable. We were told that it could be caused from the anesthesia and the tremors would subside in a day or so. Hailey was acting like herself; she played with toys and ate normally. We were discharged from the hospital the day after her biopsies.
When we were at home we noticed the tremors were not going away. One day she wouldn’t have tremors but then they’d be back the next day. I called her specialists to let them know what was happening and no one could give us an explanation. Other than the tremors she was acting perfectly normal. We had a follow up appointment with her neurologist that same week and she evaluated Hailey. She didn’t think Hailey was acting especially different, but it was clear that Hailey was favoring holding her head to one side over the other. It was suggested that we take her to physical therapy. We took Hailey out to breakfast with us after her appointment and she seemed to progressively lose her stature. She would go to pick up her piece of pancake and her little hand would shake like she was a 90 year old lady with Parkinsons. We left the restaurant and I paged her Metabolic doctor to get his advice. He said that he couldn’t think of any reason for her to be so shaky and given that she’d just been checked out by a neurologist we figured all we could do is watch her and call if there were any changes. We also left a message with Hailey’s neurologist and then went home. We put her down for a nap and when she woke up she seemed to have a repetitive tremor or spasm in her right shoulder. She was awake and playing but the shoulder kept going. I paged her neurologist and told her it looked like Hailey could be having a seizure but it was hard to tell between that and the tremors. We took Hailey to the EEG lab at the hospital to check if she was seizing and the second her neurologist looked at the EEG monitor she confirmed she was seizing and needed medication immediately. We ran her over to the Emergency Room to get her admitted. Hailey laid in her hospital bed getting bombarded with seizure meds. Nothing was making the seizure stop until finally the last medication on their list did the job. Hailey was so sweet, she was getting drugged by four medications and still managed to crack as smile when her dad played with her. We were finally admitted to the ICU. Again we were left in the dark because no one could explain to us why she was having seizures and these life threatening emergencies. Hailey’s doctors worked to rush the results of her biopsies which were just done the week before. In the meantime we waited for Hailey to wake up. The drugs that were keeping her seizures under control were keeping her sedated. Eventually she became more alert, but she never returned to normal. Hailey seemed to start to get better but then she would show signs of an infection or have some type of setback. Over a 6 week period while in the hospital she developed various problems such as: a blood clot in her leg where doctors had attempted to put a femeral line (IV). She had to have a chest tube put in her side to drain excess fluid off of her lungs because for some reason her body was retaining the extra fluid. She started to have gastrointestinal problems. Her little tummy would become very hard and distended and we would have to constantly adjust her formula intake versus the TPN (IV nutrition). She tested positive for C-diff which is a GI infection. She required multiple blood transfusions, cryo precipitate, and platelets. She also began to have a high bilirubin. When she wasn’t being sedated by medications her tremors or twitching returned and worsened to where they were not only in her shoulder and hand but also in her face. These movements were not considered seizures and several EEG’s were done to check that. She was put on a medication to reduce the severity of the twitching. Eventually we ended up surgically placing a Broviak line so because she ran out of places to run an IV that would actually last.
During this hospital stay our family reached out to other doctors in hopes of getting some help on finding a diagnosis. Hailey’s specialists talked to physicians at UCLA, Stanford, and McMaster University in Ontario, Canada. Each doctor consulted as best they could on Hailey’s case and suggested different blood tests to run. A few of the recommended tests were for CDG, a Lysosomal Panel, Fatty Acid Oxidation, Shindler’s, Alper’s, and Pyruvate Carboxylase (Respiratory Chain). It was Hailey’s neurologist who first felt like her only option was to have a mitochondrial disease. She couldn’t think of any other disease that would cause the combination of symptoms Hailey had. All we knew was that any mitochondrial disease would not be good. However, Hailey’s metabolic doctors were not convinced that a mitochondrial disease was the answer. We were in a position that doctors had sent out all the blood work for testing and we had to wait for the results, some of which took up to 6-8 weeks. It seemed like we were told on a daily basis by ICU doctors that Hailey was such a mystery and that whatever she had must be very rare. ICU doctors were urging us to consider a tracheotomy and a G-tube. We figured those things were inevitable but didn’t want her to go to surgery until she was more stable. But soon the option to do a tracheotomy and G-tube were gone.
Finally, there was a definitive diagnosis for Hailey. It was Alpers Syndrome, a fatal mitochondrial disease. The surgeons that days before were ready to operate on Hailey now told us that it would be way to risky. When I asked Hailey’s doctor how long he thought she had to live he told me it was hard to tell but he would guess about 3 months. Based on the diagnosis of Alpers and her current symptoms it was clear that she was in the beginning stages of liver failure. Nothing seemed to be working right in her body. Once we finally had a diagnosis we were able to realize that any efforts to get Hailey better would be futile. From that point doctors did what they could to keep her comfortable. We were hoping that we would have some more time with Hailey where she would be stable and not in need of major medical treatments every day. But it became clear that Alper’s was quickly destroying our daughter’s life. A couple days after we got the diagnosis Hailey’s lungs began to fill with fluid. It quickly progressed to where the doctors and nurses could only hear fluid in her lungs. We had no choice but to plan to take Hailey off of life support that night before her symptoms got even worse. I don’t know how we were able to survive that moment, but I guess we knew we had to let her go. Hailey passed away peacefully just moments after she was taken off life support. She was safe in her daddy’s arms with me right by her side.
We just desperately wish Hailey would have been diagnosed sooner. We could have avoided the surgical biopsies she had and just made better choices overall for her care. So in honor of Hailey we started Hailey’s Wish in hopes that we can help raise money to fund the research needed to make advances in mitochondrial medicine and to also raise awareness about mitochondrial diseases among the medical community and the public. We hope that with out efforts we can save another child from being a “mystery patient” and get the help he or she needs to maximize their chance of living with a mitochondrial disease.