Hey friends, I’m back! I hope your weekend & Monday was filled with fun, laughs & much needed R-E-S-T! Lol! My husband Jason & I sent the kids to their grandmother’s house & we went to see the movie HIDDEN FIGURES. I will not give any details, but just make note… go see the movie! It made me laugh, cry, upset, & excited all at the same time! It was just amazing! Don’t take my word for it.. actually, take my word for it! Just go see it lol! Well, enough about me, I want to share an incredible story with you today. My overall goal is to raise awareness. So, let’s begin.
This afternoon, I will be sharing two stories with you. One is of my son Jeremiah Elisha, and the other story is of my neighbor Myles Gebhardt. Both of these boys were diagnosed with diseases at a young age. These stories were told by myself and Myles’ mother Stacy.
A Story of Faith: Told by yours truly…
My son Jeremiah was always a bit smaller than most kids. I would always catch myself comparing his size to his friends at school and to his best friend Zahra Williams. I remember bringing it to my husband’s attention, but you know, most dads are like, don’t worry, he’ll hit a growth spurt… ya know, no worries at all. Yea, well this momma was concerned. Yes, I know I’m not very tall (5’1 to be exact) & Jason is actually the shortest in his family… 5’8 I believe… Our kids might not be that tall. I was still concerned about my boy.
Jeremiah has always been a VERY picky eater. He ate baby food up until he was 3 years old because he had a sensory disorder. He only ate sweet potatoes, spaghetti with just the sauce, no protein & Ramen noodles. If we tried a new food, he cried and would not even try it. His Pediatrician referred us to a nutritionist when we lived in Tulsa, Oklahoma (which is where he was born). Once we had a nutritionist in place, that is when everything seemed to unfold.
His nutritionist noticed Jeremiah’s stomach a lot larger than normal.She was concerned about the size of his liver. She felt like she had to refer us to a GI doctor asap. And at that very moment, my life as a mother shifted. My heart was pounding while we saw his first Gastroenterology doctor named Dr. Kayser. If we had not been referred, we would have never know that I am the one who carries the Glycogen Storage Disease Type 9 trait. I instantly felt horrible! I wondered why I carried this trait? What did I need to do to get my son back to normal? Is this a serious case of GSD? Is there a cure? I had so many questions…
Jeremiah was 3 years old when he was diagnosed. Some of the things we had to do for him was get him into speech therapy & sensory therapy. He needed speech therapy because some of his words were not very clear & he was very nervous when we were out in public. He would smile at people, but he wouldn’t talk to people he knew. He cried at men with deep voices, he cried & covered his ears at loud noises (amusement parks, fire trucks), it was pretty challenging at times. When he was in sensory therapy, his therapist would have him play with food so he could get used to numerous textures. Then my husband and I would have to do exercises at home to get him to like getting his hands dirty and actually licking food off his hands, instead of wiping it on his nice shirt… that’s another story for another day lol! When he went to school, we had to be sure to pack a small snack in his backpack daily so he didn’t feel lethargic at school.
Jeremiah’s GI visits were long at times. I had three children at the time (2011) and my husband was at work. So you can imagine what my visits were like. What made matters worse was, my son hated his visits because they always did blood work! Every visit! They would wrap him up in blankets like a burrito just so he could lay still for the long needle in his arm. This made me cry because I couldn’t help him. He was terrified! But, the nurses were very nice & they knew Jeremiah had a favorite toy he played with each visit to distract him from what was to come.
Every doctor that saw was over Jeremiah’s case said there was no cure for his disease. One doctor said he would always be shorter than most kids, he would always have a large stomach, he would always have a large liver and if choose to have another child and it was a boy, then he too will have the same disease. The doctor went on to say that my daughters may carry the trait just like me. Well, little did this doctor know what was in store for my family! If you only knew what was going on in my head while this women spot this over my family… I know a God who is BIGGER than any disease & I was refused to accept these words spoken over my kids! But, let me not get ahead of myself, I want to tell you about a procedure Jeremiah had done.
Jeremiah had a biopsy of his liver & an open biopsy. Let me explain this a bit. A liver biopsy is a procedure in which a small needle is inserted into the liver to collect a tissue sample. The tissue is then analyzed in a laboratory to help doctors diagnose a variety of disorders and diseases in the liver. This one is very simple because it’s a quick procedure. Now, an open biopsy is when they actually do a small incision and insert a small needle into the liver to take a sample. Jeremiah still has the mark on his belly to this day. These test revealed he still had Gycogen Storage Disease type 9.
Fast forward to 2013. Since my my family was transitioning from Tulsa to Virginia, my husband and I had to separate so he could find a job in VA. So our 3 children I went home to Boston to live with my parents & for 9 months! Yea, I know that’s a long time to be away from my husband & it was hard for our kids as well. But we made it out ok. While in Boston, I had to continue visits to the GI doctor for my son. The first appointment for Jeremiah is a moment I will never forget! The doctor ran test and came back with the results that read Jeremiah doesn’t have a trace of Glycogen Storage Disease type 9! Um, come again sir? What was that again…? I thought I was missing something because as you can recall, I was told in 2011 that my son would NEVER be cured of this disease! I wasn’t hearing things, that’s what the doctor told me. Well, this new doctor said he is not concerned about Jeremiah and he does t need to see him until 8 months. His liver was fine, the texture of it was normal, his stomach is not large, he has grown since his last GI visit (compared to his last visit in Oklahoma that same year), he is healthy! At that moment, my heart filled with joy and I began to cry! The prayers that we’ve prayed, the tears I shed.. the challenges o faced day to day, it was for a reason. At Jeremiah’s baby shower, his godparents (Archie & Danyle) handed us a packet of healing scriptures. They said they don’t want to scare us or anything, but we need to speak healing over Jeremiah. They told us do not take the doctor’s word, speak life over him! I didn’t question anything, I just did it! It increased my faith-walk drastically. He helped me stay positive throughout every challenge I faced. It gave me hope.
Jeremiah is currently 9 years old and he’s a healthy growing boy!
A Story of Faith: Told by Stacy Gebhardt
Our CF journey began when Myles was only three weeks old. We received a post card in the mail from the pediatrician that saw Myles in the hospital stating to contact our pediatrician immediately due to an abnormal newborn screening test. We called our pediatrician and they got us in the same day for repeat blood work. We were told that it was probably a false positive , that he still might not have Cystic Fibrosis, not to panic. They rushed the results and we heard back a day or so later that the same test came back abnormal once again. The next step, was to go to a CF clinic have sweat tests performed to confirm if Myles did or didn’t have CF. We are extremely blessed to have an accredited CF Care enter close to our home at VCU. We left from our pediatrician’s office and went straight to VCU for a sweat test. For a person to be diagnosed with CF they have to have two positive sweat tests. The first test came back positive the next day. We had to have another sweat test for the final diagnosis, but his second test came back with not enough sweat. So my poor baby had to have a third test, the results were rushed and our pediatrician called us that afternoon and told us that in fact Myles did have CF. I can still remember it like yesterday, I was devastated. Information that we were initially given was extremely scary. I remember being given paperwork that I would later learn was outdated information stating that the life expectancy of children with CF was 8 years old. I remember holding my newborn crying and thinking why my baby, why our family?
Cystic Fibrosis treatments can be very a very time consuming.
Financial challenges at times with his medications being so expensive.
Educating others about Myles’s CF. Example teachers, clinic staff, etc.
Insurance company issues (appeals, etc.)
Trying to get all therapies and medications done while still not making Myles feel like he is missing out on what other children are doing or feel different than other children his age.
Myles is very aware of his CF. We have expressed the importance of hand washing and not putting his hands in his mouth since he was very young. He was never the type of toddler that put things in his mouth, it’s like he understood this very important thing very young. We also taught him how to sneeze into his arm instead of his hands, cover his mouth when he coughs. We encourage him to keep his distance from other children when they are sick. He is very good about taking his medications and doing his therapy. He sees by doing these things he is staying healthy.
CF is a part of Myles, it does not define him. We do not let this disease stop Myles from doing anything that other children do, except maybe the indoor playgrounds at the fast food restaurants. We have never let him in these playgrounds due to the germs. Myles plays basketball, soccer, baseball, flag football, runs in kid’s fun mile runs, etc. We will never discourage Myles from trying anything, the sky’s the limit.
A Typical Day:
Vest Therapy – 20 minutes (2 inhalers)
Before Breakfast -3 capsules (pancreatic enzymes) opened on spoonful of applesauce. Breakfast is a high calorie, high fat meal.
After Breakfast – 1stp. Appetite stimulant, 1 tsp. allergy med, nasal spray, Kalydeco crushed and mixed in applesauce.
Before Lunch – 3 capsules (pancreatic enzymes) opened on spoonful of applesauce.
Mid Afternoon (snack- school)- Go to clinic 1 capsule (pancreatic enzyme) opened on spoonful of applesauce, then eat snack
After school – snack (1 capsule pancreatic enzyme on applesauce)
Play with his friends, homework, sports practices or games
Dinner – 3 capsules (pancreatic enzymes on applesauce) before meal
Before bedtime snack -1 capsule (pancreatic enzyme on applesauce before snack)
Snack-1 CF chewable vitamin, 1 kalydeco pill crushed and mixed in applesauce
Vest therapy (25 minutes) 2 inhalers – bed time
CF Clinic visits can be very long days. We are usually there at a minimum of three hours. Myles has to visit his CF doctor every 3 months. At CF clinic Myles sees his CF doctor, respiratory therapist, nutritionist, medical student, research coordinator, social worker, psychology student and sometimes more. Myles wears a mask upon entering the hospital until he enters hi private room. CF patient’s should not be around other CF patient’s for their own safety. They can share germs with each other that could make them very sick. They are supposed to stay a minimum of at least 6 feet away form each other at all times.
I have always been a Christian, but my faith has definitely grown since Myles’s diagnosis. It is an incredibly helpless feeling as a mother to know that I cannot fix this illness, but I do know that God will protect my precious boy. I do not know where I would be without my faith and hope that God is watching over Myles. I am so thankful that Myles is doing so well. Myles is blessed enough to be one of the minority of patient’s with a specific CF gene that has a special drug (Kalydeco)that he can take twice a day and it corrects the underlying cause of the disease. My husband and I both believe this is a “God thing”. We joke that we gave him the “good bad gene”. We are so thankful for this medication because it helps keep Myles’s lungs safe from infection. I have hope that Myles will live a long and productive life. He will be a husband, father and grandfather.
Our family is extremely active in the CF community. We participate in the annual Great Strides Walk, our team name is Miles for Myles. We have pizza fundraiser night and tropical smoothie nights. Myles also speaks to the Liberty University Medical School annually. Our family has served on the CFF board of directors, served as mentors, members of the CF Advisory board and much more.
I know this post very long, but I also know that there are mothers who have gone through what we’ve gone through and need to hear our stories. If you know anyone with Glycogen Storage Disease or Cystic Fibrosis, direct them to this blog so they know that there is hope for their child. And if you are a mother and you sense there maybe something different about your baby, please use it as motherly intuition and seek help. And always remember not to place limits on your child. Jeremiah played soccer, & did martial arts. Doctors told us to just monitor him and make sure he wasn’t kicked in his stomach. Myles is very active and we had the chance to see him play basketball this month and he’s awesome! So, let them be kids because they’re only kids once.
Until next time, “laugh hard, love harder, capture each moment & sprinkle a little joy in someone else’s life.” – XO Shona~