Our son is Jack Leeper. He passed away from Leigh’s Disease in February 2015 at the young age of 18 months old.
As parents trying to write a summary about the life and death of their son, we struggle to find the right words to say; mostly because there are so many things we want to tell you about Jack.
Whether you are family, a friend, a friend of a friend, or simply someone that has a good heart, we hope in some small way that what we do write, inspires you to read more about Jack and his fight against Leigh’s Disease.
We have decided to divide Jack’s story into pieces; allowing you to follow along and get a feel for how things transpired during his travels through life. We have provided several short videos along the way. We hope you take the opportunity to watch them and get to know little baby Jack. Just have your tissues ready.
We wish each and every one of you could have had the opportunity to have met him. He was so very special to us. Despite the inevitable sadness, our hearts and minds have been filled with an even greater feeling of love, happiness, laughter, (an abundance of) smiles, and so many wonderful memories of Jack.
We thank you for visiting Jack’s CHOP page.
Here is Jack’s Story…
Jack was born August 12, 2013 weighing in at 6 lbs. 10 oz., and he was perfect, as I’m sure all parents say. As first time parents, we didn’t really know what to expect. We had prepped the house, taken all of the pre-baby classes at the local hospital, and felt about as prepared as we could be. Our nieces even showed us how to change diapers.
Once our family was able to see Jack for the first time, we remember Jack’s 5 year old cousin saying how adorable he was. We must say, he certainly lived up to that as he was one of the cutest babies we’d ever seen and we would tell him that often.
He had big blue eyes and it wasn’t long before he had the coolest blonde hair. It was so fine you couldn’t help running your fingers through it over and over again. Jack’s hair was one of several unique things about him that we loved. (Keep a mental note of this as we’ll revisit it later when we get to his farewell).
Jack’s delivery into this world went surprisingly smooth and 3 days later we found ourselves at home learning how to be first time parents… and how to change all of those diapers!
Six Months
Of the course of six months, we felt like things were going well. We had been so concerned about SIDs and we were finally getting past the danger. He was breast feeding just fine, we felt like he was developing his motor and problem solving skills, and really was starting to develop his own personality. He appeared to be growing proportionately and was strong. He was incredibly coordinated. We’d toss him little footballs and he’d catch them every time.
Early Signs
From months six through nine, when it was time to transition Jack to solid food, we had some challenges. We could not get Jack to drink from a bottle nor eat any solid foods. We presumed that this was a common issue when weaning a baby from his mom.
At times, he would get choked up and spit up. His Gastroenterologist prescribed medication for severe acid reflux (GERD).
Despite, the transition to solid food challenges, Jack remained very happy, active, strong, and filled us with plenty of smiles.
Developing a Passion for Music
Every morning, I would carry Jack and walk past a big mirror in our foyer and we would wave at it. We called it the “good morning mirror” as we would affectionately wish the cute little baby in the reflection a good morning. Haha…Jack loved to wave. On a side note, later in his life, just before he passed away, we took him to the circus (his one and only time). He would wave to all of the animals as they entered the arena. It was priceless.
During most mornings, we would sit at the counter together and watch videos of Dixie land jazz bands playing “When the Saints go marching in”. We then moved on to the intro to Scooby Doo and the ending to the 1960’s Mickey Mouse Club. He loved the oldies too, especially “At the Hop”. However, the ending to the 1960’s Mickey Mouse Club was his favorite. He could be right in the middle of feeding and he’d stop and turn to watch this video. He loved it.
Jack absolutely loved music. We have provided a link below to a video we put together that shows Jack’s passion for music, and playing the piano (or trying to eat it). The song accompanying the video is The World is Waiting for the Sunrise; Jack’s great grandfather’s favorite song.
The Crash
It’s now June of 2014, Jack was 10 months old. He was having his best days; sitting up and digging through his box of toys similar to children of his own age. We couldn’t help thinking how great he looked. A few days later, Jack was over at his grandparent’s house and seemed to be irritated more than normal. He kept pulling at his right ear and did not want to sit in his chair. He went out to the patio with grandma and sat on her lap while playing with the tags on a little green pillow. He let out a really deep exhale, a moment in retrospect that we believe was the moment he may have crashed.
Later that day, Jack was throwing up more than normal. He became very pale and lethargic. We became really concerned so we opted to take him to the pediatric emergency care facility to have him checked out. After an hour, the doctor on-call suggested we take him to Medical City in Dallas for further tests. They admitted Jack and gave him fluids via IV to keep him hydrated . He was so dehydrated they could not even find a vein in his arm to put the IV so they placed it in his foot instead.
The next morning, they ran an MRI on Jack. Around 3pm that day, a doctor came into our hospital room and told us that Jack had lesions on his basal ganglia (part of his brain that controls his motor ability) and had lactic acidosis. From this, she stated Jack had Leigh’s Disease.
We had no clue what any of this meant and certainly didn’t know what Leigh’s Disease was. However, in a matter of a few short minutes, they proceeded to tell us that Leigh’s Disease is a rare mitochondrial disease that currently has no cure, and is fatal within 1-3 years.
Words cannot even describe this moment. We remember looking down at Jack as he laid on the hospital bed…those beautiful blue eyes looking back up at us. We felt so helpless because there was absolutely nothing we could do. We cried and cried.
Medical City transported Jack by ambulance to the Children’s Hospital of Dallas where we spent the next 10 days.
Jack’s Fight against Leigh’s Disease
This is really where Jack’s other half of his life begins. From this moment on, all of our lives were changed forever as Leigh’s disease was a part of our everyday lives.
The First 10 Days
While an official diagnosis was not made at this point, the overwhelming conclusion from the neurologists is that Jack had Leigh’s Disease but further tests would be required to confirm. He could no longer sit and he became very “floppy” which basically means he couldn’t hold himself up. However, there was an immediate need to restore Jack’s vitals, namely weight and lactic acid levels.
Jack was outfitted with a NG feeding tube that ran through his nose and down into his stomach. In retrospect, this feeding tube was probably more traumatic for us than it was for Jack. This tube gave Jack exactly what he needed and he was back to gaining weight and his lactic acid levels were normalizing. We all agreed to avoid invasive testing until he was back at his baseline.
The Gift
There was a day while we were at Children's that we remember very well in which he rolled over, gave us spectacular tummy time (i.e. the superman), and would grab toys and hold them triumphantly over his head. Jack was fighting. He was alive and showed signs of improvement. He even gave us his “bah bah bah” speech and we were elated.
On July 4th, Jack’s Great Grandma passed away while we were with Jack at Children’s. While this was more terrible news for our family, we couldn’t help think that maybe Grandma knew Jack was very sick and had given up a spot in this great universe so Jack could live just a little while longer.
We would like for you to watch a short video that we have called Jack’s Fight Against Leigh’s Disease. It shows a lot of pics from his initial ER visit through to the days after he checked out of the hospital; in which Jack is shown peacefully asleep with two medical cords in his hands. What we really hope to convey is that it shows Jack's rise to fight another day. Jack never, ever gave up.
There are two songs that accompany this video:
- The end theme to movie Glory
- Dreaming of Bag End, from Lord of the Rings.
The First Two Months
We checked out of Children's and were home. We rented a scale from the local hospital and weighed Jack every day, recorded his weight in a big book we created to track things along with his strict feeding and medicine regimen. We had an IV pole, a feeding machine, and were getting acclimated to things.
We were seeing Jack gain weight and were excited that he was almost getting too big for the scale. He just looked healthy albeit he still couldn’t sit or walk.
He still had his NG tube through his nose and we got real good at putting it back in if it came out. We had a stethoscope to listen to the air when we pushed on his stomach to ensure we had the correct tube positioning. If you didn’t, you run the risk of having the tube go down into his lungs. We were so meticulous with the tape job to seal the tube on Jack’s cheek too.
Side Story - We still laugh to this day that one night, we checked on Jack while he was sleeping only to find out that he’d rather stay awake, undo the tape from his check, pull out his feeding tube from his nose, and would whip it around like a lasso as formula sprayed everywhere. It was a micro sprinkler and had been running for some time. He was soaked and thought that was so much fun.
So we said this wasn’t going to work so plan B was to get a more permanent solution. In late August, Jack had a G tube surgically installed at his stomach that we could open a little plastic flap and insert his feeding tube. All of this was safely tucked behind his onesie out of reach of prying hands. This was significantly easier than the NG tube but what it also did, was allow us to see our little boy’s face again. He was so darn cute.
His First Birthday
We are very thankful that we had at the opportunity to have one birthday with Jack. We took full advantage of dressing him up in a Yoda outfit. The video we have put together is from his first and only birthday party.
The Leeper, Adams, and Linden families sang along while Jack’s dad played the piano. We cry every time we watch this video. Get your tissues ready.
Therapy
Jack also attended therapy daily. This included three types:
- Physical
- Occupational
- Speech (feeding)
Jack was aspirating all liquid types when he would swallow, meaning he would choke and swallow liquids down into his lungs. As a result, we needed to strengthen his swallowing muscles with a therapy called Vital-Stim.
In October of 2014, Jack enrolled into Children’s Our Children’s House for an intensive therapy stay. We stayed 5 weeks as an in-patient developing his ability to eat solid foods while working on his physical and occupational therapy.
We stayed with Jack every day and every night. This experience was so wonderful for Jack and cannot thank the nurses and doctors enough for what they did for Jack.
By the end of our stay, Jack was eating solid foods and he was stronger than ever. He still couldn’t sit or walk, but he could roll around like lightning and boy could he kick his legs. Jack was discharged mid-November, and shortly after he went through another surgery to place a better and easier to use feeding tube in his stomach.
Here are two of our favorite videos that show Jack’s personality. We would like for you to watch them because it gives you just a glimpse into the personality of Jack.
The first video is of Jack High Fiving his mom and having fun as she made swoosh sounds.
The second video is Jack being mischievous and using his problem solving skills.
Official Diagnosis
One week after we left Our Children’s House, we received a call from Jack’s Geneticist. Jack was officially diagnosed with Leigh’s Disease via a test of his SURF1 gene. It was also confirmed he received the mutated gene from both of us; we were carriers and had no idea. Jack had a 25% chance to get Leigh’s disease from us.
We knew deep in our hearts this was his reality, but hearing it officially confirmed shattered us and our entire family.
What is Leigh’s Disease?
Leigh’s Disease is a rare inherited neurometabolic disorder that affects the central nervous system. It prevents a person’s mitochondrial cells, or energy, from being able to power their body to work. Leigh’s Disease presents early in life, and symptoms can progress rapidly. Due to the lack of energy being provided to the mitochondria, there is progressive degeneration of major motor functions. There will also be a loss of appetite, muscle tone (hypotonia), ability to eat without the assistance of a feeding tube, and many other symptoms.
There is currently no cure or viable treatment available at this time, and prognosis is poor.
Everyone has mutated genes to some degree, which makes each of us unique. However, Leigh’s Disease for Jack came down to a specific gene mutation. There are roughly 24,000 genes in the human body. Jack had one muted gene that caused Leigh’s Disease. Just one.
What impact does Leigh’s Disease have on a person?
Since specific defective genes can prevent the mitochondria from powering your body, Leigh’s Disease may lead to respiratory and other organ failures.
The way the doctors described mitochondria to us so we could understand is that the mitochondria are like the spark plugs of a car. You can put in all the gas you want into your car, but in the end, there must be a mechanism that powers it. When the mitochondria fail to power the body, the cells in your body cease to work; vital organs will eventually stop working, and eventually lead to death.
Leigh’s Disease may not be known right away and may take months or years to manifest. In Jack’s case, it took 10 months before it prominently showed.
The Holidays
We spent the holidays enjoying as much as we could, as we did not know if this would be Jack’s last Thanksgiving or Christmas. We would like for you to watch a short video of Jack during Christmas. We love this video because Jack had the classic reaction to stranger-danger when Santa came to visit.
Jack also enjoyed opening presents on Christmas day. However, the part we love the most, is he especially enjoyed crinkling the metallic wrapping paper and wiggling himself to end up under the tree to play with the string of lights. At the very end of the clip, pay close, special attention to Jack being so excited he could hardly catch his breath. Seeing him happy was such a good feeling. Despite everything Jack was going through, he was happy, interactive and his sweet nature always shined through.
The music that accompanies the video is the old classic Frosty the Snowman, another one of Jack's favorites.
Jack’s Farewell
Jack passed away during his sleep on February 8, 2015 due to respiratory failure as result of Leigh’s Disease. He officially passed away at a nearby hospital having been transported by ambulance. The ER doctors did all they could do and we are thankful for them trying their best to keep our sweet boy alive. Our last memory of Jack is him laying on the operating room table. We played the ending to the 1960’s Mickey Mouse Club for the last time. We were able to cut off a small piece of Jack’s hair; allowing us to have something for our memory books.
Jack died just 8 months after our initial emergency room visit in June 2014.
While we are thankful that Jack did not suffer, losing him so unexpectedly is so incredibly sad. He even enjoyed some ice cream earlier in the day for the first time. As parents that had a son with a terminal illness, the end is all too soon. We desperately wanted to say good bye to him, kiss him one more time, and touch pointy fingers telling him that I’ll be right here. We love our sweet boy so very much and will miss him forever.
To see some of our favorite pictures, please watch the short video that we played at his life celebration. It’s his farewell. The song that accompanies this video is called Feast of Starlight; from the Lord of the Rings
Jack’s Travels
Reflecting on Jack’s travels through life; before, during, and after Leigh’s Disease, fills our emotions with a great sadness, a feeling of regret in the loss of memories we’ll never have with Jack, and the weight of guilt; after all it was a mutated gene received from both of us that led to his short life.
Jack had such an impact on just about everyone he met. Despite his awful diagnosis he was a fighter and gave Leigh’s Disease all he had. He was such a happy baby and was the sweetest little boy you would ever meet.
Shortly after Jack passed away, an announcer on a local classical radio station here in Dallas quoted a gentlemen by the name of Leo Buscaglia who has worked with special needs kids which we felt embodied how we felt about Jack and the devastating diagnosis when jack was just 10 months old.
"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.
Worry never robs tomorrow of its sorrow, it only saps today of its joy and what love we have given, we'll have forever.
What love we fail to give, will be lost for all eternity."
- Leo Buscaglia,
Jack’s Life Celebration was just that, a celebration. We could not bring ourselves to have a funeral. We needed to celebrate Jack and his kind soul. So we hosted an open house and asked everyone to wear cheery colors and to talk about Jack and talk about him often.
We played music and videos to show Jack’s personality and how much he enjoyed life.
Reaching for the Stars
Jack was always reaching for things; reaching for toys, the Christmas lights, and us. As you can see from the photo above, he is truly reaching for the stars in one of our favorite Christmas pics. We even were inspired by little star lights that were sprinkled all over our walls one afternoon. The light had been just right to bounce off of a little vase next to his great grandma’s picture. We then decided to hand out bracelets at his Life Celebration that stated “Reach for the Stars…Love, Jack.”
Our family and friends from the celebration started taking pictures of themselves when they went traveling and wearing the bracelets. They would send them to us stating “Jack is in Florida!” …”Jack is at the NFL Draft” …”Jack is in Ghana”….We even received pics of service members whom we have never met wearing Jack’s bracelet while serving overseas.
From this we created Jack’s Travels on Facebook. Jack has been all over the world. We enjoy receiving hundreds of pictures from close friends to people that we do not even know.
You can view Jack’s Travels page and request bracelets. Just click here:
www.facebook.com/jackthetraveler
What you can do to help
When you think about the world’s future and the kids that are or will be impacted by Leigh’s Disease, it just breaks your heart to no end. Just put yourself in a moment and think of all of the experiences these wonderful infants have with their parents; the bond, the feeling of their breath on your neck as they nap, or when you blow kisses into their neck and it makes them laugh because it tickles, or when you touch pointy fingers like they did in E.T. realizing just how tiny that little finger really is.
We are determined to help find a cure or a viable treatment for Leigh’s Disease. The Mitochondrial-Genetic Disease Clinic at Children's Hospital of Philadelphia is one of the top research centers in the nation for mitochondrial related diseases such as Leigh’s Disease.
Historically, a major obstacle in finding a cure or treatment for mitochondrial diseases such as mitochondrial malfunction can be caused by a wide number of genetic defects. Through this research project, we will be fundraising for Dr. Marni Falk and the team at CHOP to research Leigh’s Disease, and to specifically look at the SURF1 gene. We feel strongly that this research project has the potential to have a dramatic positive impact for the thousands of children that suffer from this terrible disease.
Thank you for your interest in the Jack Leeper Research Fund. 100% of all contributions are tax deductible and will go directly towards Dr. Marni Falk’s team for Leigh’s Disease research.
Thank you for your continuous love and support,
The Leeper Family
Get The Word Out
https://chop.donordrive.com/campaign/Jackleeper