In 2017 our daughter Terianne was diagnosed with an incredibly rare genetic condition called Neutropenia. Our family's life got turned upside-down. Because Neutropenia causes the person to be highly susceptible to bacterial infections, we were unable to leave the house for anything other than work and school for over a year. It's hard to even write this now, remembering the look of my 8 year old's face when I told her we weren't going anywhere for the holidays. And that was the least of our concerns, Terianne was sickly and in and out of the hospital with serious bacterial infections for almost a year.
Still to this day we need to take her to the ER for even a small fever. When we get to CHOP they rush her right to a room as to not expose her to the other patients and admit her to a special room that filters in outside air as to not expose her to the bacteria in the hospital system. Every person who enters must wear a surgical mask and gown which is pretty scary to a 2 year old. It took her months to sleep through the night after all the hospitalizations.
Terianne is currently on a fairly new medication called GCSF which helps her body to fight infection by increasing her Neutrophils. This medication has kept us out of the hospital and keeps her bloodwork numbers even; however, it is not ideal. It is a daily subcutanous shot that I administer to her myself, it must be kept refridgerated, and it is quite painful. But the worst part of GCSF is that it increases the risk for Leukemia. The type of Neutropenia that Terianne has is also rare, she is our one-in-a-zillion kid! Sadly it is also one of the most severe and least cured conditions. It is called Severe Congenital Neutropenia or SCN for short. CHOP's suggested cure is called a Bone Marrow Transplant, taking live bone marrow cells directly from one person and injecting it into the first person. Sounded simple, but I always do research and what I came up with was not pretty.
A Bone Marrow Transplant (BMT) requires chemotherapy, a painful surgury with months on in-patient recovery, and another year of isolation while her bone marrow rebuilds. Also, it is not a sure bet. After all that, it still may not work. Complications such as graft/host issues could mean a lifetime of a whole other list of medical issues. So I did what I do best and I prayed, I prayed hard. And God sent a spiritual healer to my brother's church, then the healer said what I needed to hear to open my mind to the impossible. And then my dear friend Janelle(who I always knew was capable of the impossible) put a post on facebook that stopped my heart. She said that she had cured her son's DNA. I had been scouring the internet looking for proof that DNA could be healed, and here it was on my Facebook Page.
I sent her a message, then I sent her a hundred more messages, and then we decided to go see the doctor. Dr. Julie is a great listener as well as researcher and by the end of the first visit in person, she knew Terianne had a chance to heal from this "unhealable" condition and had a detailed plan. Homeopathics, Vitamins, Supplements, Hydrotherapy, and Castor Oil Therapy, all typed up and ready to go. I was completely overwhelmed! I was overcome with joy that someone believed this could be cured without the BMT. But, I must admit I was also overwhelmed at the sheer volume of changes that we had to implement into our lives.
First of all starting that moment our whole family went sugar, dairy, and soy free (as well as other general health guidelines). We purchase and administer her homeopathic remedy, vitamins, and supplements. And we do hydrotherapy and castor oil therapies daily. But we were led by God to Dr. Julie and we we going to do every single thing she said. And of course, it worked! Terianne's dose of GCSF is now so low that her chance for developing Leukemia has seriously decreased. Her Neutrophil level gets higher every time they check it! And we hope to be a fully cure success story with the year!!! We can go to family gatherings and let the kids play with their cousins. We had an amazing first birthday party for her little brother Gerald. Terianne can go to her big sister, Kira's clogging performances. They may not seem like big achievements for most people but for us it is huge! We still hand-sanitize a ton and cringe when someone sneezes in public but it's getting better.
But the best part by far is Ms.Terianne herself. She has blossomed into a beautiful, funny, charming, healthy little girl. She has tons of energy, sings and dances all day, and loves to go to the park. And like any 2 (almost 3) year old girl, she does not like to get the shots. It is really the hardest part of our day as a family. We all love her and don't like to hear her pleas not to get the shot. It's heartbreaking. All of this has made it really hard to get out to work and all of our new dietary requirements, homeopathics, vitamins, and supplements really add up. I must be home every day at around the same time for her shot, and my husband and I are responsible for her strict diet and therapies. Life is hard right now, but I wouldn't trade it for anything. Having a big part in my daughter's healing gives me great pride. And challenging myself to cook healthier and more diverse has been nothing but good for all of us. What seemed an impossible task has become our reality. We humbly thank God, Alan Ames (the spiritual healer), Janelle Chambers (friend who does the impossible), Dr. Julie (our nautropath), our family and friends, and all of you that are taking part in our journey now. There are a few things you could do to help us: 1. Pray for Us (I hope everyone does this one as often as they can remember) 2. Donate to the Fund to help us pay for our Naturopathic Care 3. Write to your Senator and insist that Alternative Physicians be registered and licensed in the state of Pennsylvania so that these doctors can be covered by insurance in the future 4. Share this page to your social media. 5. Eat healthy, do your research when it comes to medicine, and seek alternative treatments when conventional doctors do not have a suitable solution. This seems to be the case especially for chronic conditions, i.e. cancer, genetic conditions, autism, etc.