Tell us a little bit about your family.
John and I met at a Church Social. We both went to different churches, but our churches got together every month, for a singing and fellowship social. We started dating and married a year later. John and I have been married for going on 31 years. Grace, our oldest, is 24, Charity is 22, Josiah is 19, Faith is 17, and JC is 9. We have 3 dogs, 1 rabbit, and a hamster.
John works for Liberty University in the HR department. I am a full-time mom at home. Grace graduated Liberty University and works at the Bedford Museum, in Bedford. Charity currently works at Bedford Animal Hospital, and will be graduating Liberty University in May. Josiah is currently an online student at Liberty and is working as his brother’s aide. Faith is a Junior at Jefferson Forest High school, and works at Bojangles!
How long have you lived in Southwest Virginia?
John and I moved here from California, what will be 21 years in July. We moved here so that my husband could get his degree at Liberty University, and we have lived here ever since.
Tell us about JC, how did he join the family and discover his disease?
We have known JC since he was an infant. JC came to our home one March morning, when his parents tested positive for drugs and asked us to pick up their son. JC was 2 years 4 months old and was only 19 pounds. JC flourished in a short amount of time, growing out of his 12-month size clothes, quickly into a size 2T. We took custody of JC in July 2010. We adopted JC when he was 5 years old after his biological parents relinquished their custody.
The day we received custody papers, JC got sick. He threw up all day, and all night, throwing up again in the morning. I took JC to the doctors, and they admitted him into the hospital, as his sugar was 38, and his bicarbonate and other electrolytes were seriously wrong.
He spent several days in the hospital, getting fluids, while we thought he was struggling through a stomach bug. We were told if he were to get sick again, to return to the doctor quickly because they needed to make sure he didn’t present the same way again.
JC kept having bouts of vomiting, and low sugars, especially in the morning. He went through every test out there, with sugars getting as low as 22. We went to the Children’s Hospital of Philadelphia, where they said he had Glycogen Storage disease and wasn’t able to store sugars. We had to keep his sugars up during the night, or his sugars would bottom out in the morning making him sicker.
They placed a gastric tube, enabling him to get constant sugars during the night. This surgery was the beginning of our answers for JC. This surgery caused JC a 10-day hospital stay and going home on a low dose of continuous feeds, and they thought he would never eat again.
JC continued vomiting and having an issue with muscle pain, and by this time his pediatrician, our friend, Dr. Melody Ailsworth, told us she believed he had a Mitochondrial Disease, and felt he needed to be tested. There were too many systems at this time failing, that she just knew there was something else. This lead us to Atlanta GA., where we met with Dr. Shoffner, who took a skin biopsy, and told us that JC did indeed have Mitochondrial Disease, but he also had 3 harmful gene mutations, which also cause muscle breakdown, and one day, JC would have no muscle function at all. He had two things working against his muscles.
Today, JC is a happy, thriving 9-year-old. He gets hooked up to formula during the night, and receives IV hydration 6-10 months out of the year, at times having to be TPN dependent when his gut shuts down. He just recently got fitted for a wheelchair, as there are days his legs are so painful, that he can’t walk, and he crawls around the house. His muscles have weakened, causing his ankles to give out, putting pressure on his feet, so his doctor has put in a script for him to be fitted with braces, to help support his ankles/feet.
JC’s teacher comes to the house 2 days a week for school, as JC is immunocompromised. He doesn’t get out, and we ask others to stay away if they are sick, or been exposed to someone sick. A common cold/flu can be devastating to JC, which could potentially cause further muscle damage in his body.
How has JC’s disease affected your day-to-day life?
Mitochondrial Disease is so tricky. We never know what we may face in a night/day. There have been numerous times, where 2:00 in the morning, JC will wake up vomiting. Immediately, we stop his nightly feeds, and access his port, starting IV fluids. We then call his doctor, have to have labs drawn, and we immediately start TPN, and we give his gut a break.
Usually, when JC wakes up vomiting, his belly bloats, and he vomits for days, until his stomach and or bowels wake up and start working again. JC has gone as long as 6 months on TPN and as short as 7 days. We never know how long his stomach/bowels will stop working, and we’ve been told that one day, they may stop forever.
JC also has a Cycostomy tube, which allows me to flush out his bowel when he can’t do it himself. Just last week, he asked me to flush his colon, as he couldn’t go to the bathroom. We’ve been told his intestines are floppy and large because he has gone so long without use.
The mitochondrial cells of the body, are the powerhouse cells. It’s like his body needs lots of rest, to recharge his cells, so rest is key for JC. We just never know what our day holds. Throughout this medical journey in the early days, JC and I have spent over 386 days in the hospital, over a 2-year span. I stopped counting after that.
Thankfully, we have had many awesome nurses & doctors, who have taught me to do everything at home. I access his needles, change both of his tubes, and change his IV/TPN bags. This has allowed us to be home, and keep our family together, and thriving!
What were some of your initial fears when you discovered JC had a mitochondrial disease?
The unknown. When we were sitting in Dr. Shoffners office in Atlanta, without our other children, waiting to hear our diagnosis, and prognosis, my husband and I, just kept praying, and asking God to help us be the parents JC needed, and the grace to get through whatever it is God has entrusted us with. When the results were read, and we sat there in disbelief, I asked the Doctor, “Are you saying that one day, JC will basically have no muscle function at all? A vegetable? Not able to walk? Talk?” The Doctor sat down next to me, looked at me sadly, and said, “Yes! I can’t tell you when that will be, or what that will look like, but unfortunately your son has two things working against his muscles. He can’t break down sugar or store it, he can’t break down fats, and you have a long, hard road ahead!” I just cried.
My husband and I were quiet on our ride back to the hotel. We didn’t want to talk in front of JC, who at that time, was just 3 ½ years old. We waited until he was asleep, and I cried. I remember my husband saying, “Honey, God brought JC into our lives for a purpose, and God will give us the grace to walk through each moment as it comes. We can do all things through Christ, and we will be stronger, and we will raise JC to be an overcomer and to know that God has a purpose for his little life. Our family will be stronger for all the adversity, and God is teaching us to love, as He loves, and we will make it, with God as the center!”
We have never looked back, but we have had to remind ourselves many times, that God has a plan, bigger than us, and we will trust in Him, and know that He loves JC, He loves our family more than anything, and we are blessed!
How has the experience affected the siblings? How have friends and distant family reacted?
This journey has been difficult for our older children. Our oldest, just 18 at the time, became a mom on many occasions. We had to go to Atlanta, leaving our other children at home, and our 18-year-old in charge. She became chauffeur to her other siblings, and teacher, etc. Our next oldest daughter cooked meals and shopped for groceries. It was a huge undertaking, and burden for each of them, but they did it with gladness.
We had full confidence when we were away for days on end, that they were in God’s hands, and mature older siblings. Our kids have spent Christmas eating pizza in the cafeteria of the hospital, being separated from their mother for 10-15 days at a time, while being in the hospital, ultimately missing us for those 380+ days, and having their whole worlds turned upside down with medical equipment, nurses in/out of the home, and uncertainty of what was to come.
Through it all, we have become stronger, and God is teaching us daily what it is to truly love someone, and to realize we aren’t perfect, and that we can do anything with Christ at the center! Has it been easy, NO! Would we change a thing? NO! We have been blessed beyond measure, and are thankful!
I have lost friends, as they don’t understand our lives. I was active in church, singing in choirs, playing piano, helping with children’s ministries alongside of my husband, but all of that changed, when JC kept getting sick, and we realized he couldn’t be at church or school anymore.
JC and I now have our home church, watching Thomas Road Baptist Church, and fellowshipping together each Sunday morning. We make it a time we can sing to the Lord, and be encouraged! I do have a lifelong friend who is patient, and we get together at the last minute when things are calm, but it definitely has been a huge change in our lives, one we have all had to adjust too!
What’s a big misconception with either the disease or treatment plan that you wish you could teach the general public about?
People can be so judgmental. One day, I had to run into the store, and I parked in the handicap parking space, put JC’s mask on, and out we went. For the longest time, until JC was about 7 years old, I would lift him up, and put him in the cart, because his legs would get painful, and he couldn’t walk, so parking near the front, after walking in the store, was a huge help.
One day, I got the nastiest look, and a woman muttered under her breath about us being a handicap parking abuser, and how disgusting we were! I want people to know, that sometimes, looking at someone from the outside, you never know what is going on in the inside. IF she only knew that JC just hid his tube, and his backpack (filled with IV fluids), because this woman stared at him, and muttered under her breath, and how embarrassed he was.
We never know what someone is suffering with, or what their condition is. I remember that day, coming home and rubbing out cramps, because just walking in the store, JC was done in, and his legs paid the price.
We never know what someone else is going through, and we need to be kinder to one another, patient, and understanding. You never know what someone is going through, or has experienced.
What are some of your children’s long-term life goals?
Grace has graduated LU with a degree in history. She loves history, and is blessed to work in her field at the Bedford Museum. Charity is graduating LU with a degree in Zoology, hoping to get into veterinary school, and become a vet. Josiah is currently studying business/sales at LU, and hopes to get into sales after graduating. Faith, desires to one day become a police officer, or in some sort of investigator in the police field one day. JC has big plans. He wants to be a police officer, an astronaut, firefighter, teacher, salesman, you name it, he desires to become it! He loves cooking shows, and wants to be a chef one day too!
What advice would you give to someone at the start of a lifelong medical journey such as yours?
DON’T EVER GIVE UP!
Be your child’s advocate. Stand up for yourself, and your child, and don’t give up! Find a doctor you can trust, who loves your child just as much as you do! Research! Get involved in groups who have the same conditions or symptoms, and find out all you can from them, as their experience can prevent a whole lot of future complications, just from their own personal knowledge. Get a Case Management Nurse through your Insurance. Ours was invaluable and got us through so many loopholes, and roadblocks. Ask questions. If you’re uncomfortable with a decision, get another one! You have to have confidence in your doctors, and I am so thankful for the team that looks after JC. We are blessed!
What advice would you give to someone who is a friend/family of someone with a serious medical diagnosis?
Be there. Listen. Don’t ask what you can do for them, just go do! They are going to be so overwhelmed, and if they have other children, they will feel guilty that they can’t do for them as they used too, and guilty that they can’t clean the house, or get a meal on like before. Let them know you are bringing a meal, let them know you are coming to clean their house, or play games with the other children, while they go get some rest. Write them encouraging words, or leave them a voicemail. If the journey is long, don’t forget them. Be there! Love them!