Updated: Sep 10, 2018
My name is Renee and I am the owner of Mood Boutique. I want to tell you about my baby girl if you will let me. Some of you know that we donate 10% of our sales each month to a different charity, and that this month that charity is the Bethanys Hope Foundation. This story will help you understand why. Dave and Lindey McIntyre are the founders of Bethanys Hope. Their little girl, Bethany, passed away from the same disease that our daughter did. They guided us through some of the darkest days of our lives and have become very close friends. They have the most amazing story, I will attach a video at the end of this blog so you can see first hand what they did. It is what we had hoped and prayed for when Athena was still alive. Although it can no longer help us, we hope and pray that this miracle, 23 years in the making, can spare families from ever having to go through what we did. So here is Athena's story, thank you for reading...
Athena Noelle Reitano is our second daughter, her older sister's name is Raven, they are 3 years apart. Athena was born 4½ weeks premature and had some health issues at birth, but quickly turned into a thriving, brilliant, beautiful little toddler. We were thrilled…we had two beautiful, healthy children. Everything seemed wonderful in our lives. Our family was complete with two children, we had just bought our first house, and we were happy. Life went on very uneventful for about 2 years, we were like any other typical young family. Our lives revolved around our girls and we were just enjoying watching them grow and experience new things. Athena was hitting all of the normal physical and mental milestones that she was suppose to, but she wasn't walking on her own. She could "cruise" along furniture and walk if we were holding her hand, or if she was pushing something like a doll stroller, but not without holding onto something. She could climb anything! Her upper body strength was amazing for her young age. We were told that her independent walking was probably delayed because she was a preemie, but not to worry, she would catch up. So we didn't worry. She was so smart, and so happy. Nothing seemed to bother her, she kept up with her sister and her friends just fine, so we just trusted that she would get there in her own time. We got an occupational therapist for her to help her along, other than that, we were confident that she was fine.
Then, on Athena 's second birthday, after her party, our world fell apart and was never the same again. We noticed Athena having some very troubling physical problems. She was having extreme difficulty with head control and balance. She couldn't get her sippy cup to her mouth when trying to take a drink. Then she quickly lost the ability to pull herself up or sit unassisted, she just fell over. She also started dragging her head on the floor when she would crawl. We panicked and our pediatrician sent her to a neurologist.
This is where the nightmare began. The neurologist wasn't sure what Athena had, but she was quite sure that it wasn't good. The symptoms were serious and they wanted to do a battery of tests on her. This went on for an entire year. They would think they knew what it was, and then take back the diagnosis time and time again. Sometimes it was something that seemed like a relief and could be treated, like lyme diease, or Chronic Inflammatory Demylenating Polyneuropathy...other times they would come up with something much more scary, like ALS (Lou Gehrigs disease). But in the end, the diagnosis was the most devastating disease that we had ever heard of. Athena had the late infantile form of Metachromatic Leukodystrophy. Metachromatic leukodystrophy (MLD) is an extremely rare, progressive, genetic disease. There is no cure or treatment. The disease causes loss of all muscle control so that you can not walk, talk, sit up, even smile. The loss of the ability to chew or swallow means a feeding tube will be needed for nutrition and medication. The inability to cough makes chest PT and constant suctioning of secretions necessary to prevent choking and pneumonia. It causes you to go deaf and blind. It causes seizures, severe nerve pain, brittle bones, and a severe curvature of the spine. These children are basically trapped in their own bodies, relying on others for every single movement, they can not do one thing on their own. Most children are eventually left in a vegetative state at the end and all will die at a very young age. Life expectancy is 3 to 6 years old.
My perfect, beautiful angel was going to die unless we found a cure. Believe me, we tried to find one. We spent every moment of her life either caring for her or searching for a clinical trial that could save her life. We knew research was close, but we also knew that time was not on our side. We were told over and over again that it would not come in time to save her. It didn't...
Athena passed away just a couple days short of her 9th birthday. Her little heart just stopped beating. The heart is a muscle, so when you have loss of all muscle control, that means the heart and the lungs will eventually stop working. She was sleeping in bed with me so that I could monitor her oxygen level. She was alive when we woke up that morning. I got out of bed, brushed my teeth, and when I came back into the bedroom, she was gone. I hope none of you ever have to experience what that horror is like. I can't even begin to describe it. As I write this, I am re-living it ,and it is hard to breathe even now, 8 years later.
Athena should be a senior in high school this year. Watching her class mates go to prom last year was one of my hardest days...I can't even imagine what graduation day will be like. I will forever have to wonder what she would be like. What would she look like? Would she be artistic like her sister? Would she be into sports? What college would she want to go to? What would she want to be? I will never know.
Athena was extraordinary, I can't explain it, but there was something about her that people were drawn to. Her headstone reads, "some only dream of angels, we held one in our arms". I truly believe we did. She was an angel sent down from Heaven to teach us about love, strength, compassion, empathy...the list goes on. She had an aura about her, a light that shone from within. Her smile and laugh were infectious. She was the embodiment of all that is good in the world, and is irreplaceable in our lives.
There is good news in this story. The research is there now. They are so very close to eradicating this disease! I hope our story encourages you to want to help bring that cure to fruition. Because this disease is so very rare, it doesn't get the funding that other well known diseases do. Please consider helping the Bethany's Hope Foundation bring their research to human clinical trials for 5 children. Their families are in a race against time like we were. Please help them receive the miracle that was so close, yet so far for us. We are giving 10% of our Mood Boutique sales to Bethany's Hope this month, so if you are going to shop for clothes, please consider shopping with us. Or, go straight to Bethanyshope,org and donate...any amount is so appreciated! Thank you for reading.
This is Athena:
This is Dave and Lindey McIntyre's story:
Random photos of Athena (and Raven):