At age 5, Jackson Jinright had accomplished more than most people do in a lifetime.
At that young age, he was already a world traveler, had earned countless friends and fans, faced unimaginable diversity with immense courage and determination, reached higher than most ever hope to ... and despite mountains of physical challenges, never had a bad day.
Jackson's trials came in the form of Peroxisomal Disorder, a rare congenital affliction caused by the absence of cell components. Developmental delay and impairment of vision and hearing are common to PD patients.
After fighting battle after battle head-on, Jackson is free of the disorder that stole his sight, speech and prevented him from walking. He passed away Dec. 7.
Despite a shortened life, his story is one of amazing accomplishment.
Jackson was born March 3, 2007 -- a very happy baby, according to parents Travis and Angie of Sugar Hill. But quickly, the Jinrights were concerned with his lack of developmental progress.
"Between his second and third months, there was no weight gain," mother Angie told the Daily Post for a story in 2010. And Jackson wasn't as active or mobile as they thought he should be.
Because the disease is so rare (estimates of birth frequencies run as high as one in 150,000), the PD diagnosis came slowly.
When Jackson was three months old he underwent two weeks of testing at Children's Healthcare of Atlanta at Scottish Rite. It wasn't for another two months that the Jinrights received the diagnosis.
Thus began a life of arduous treatment and surgeries and a grueling schedule of therapies. It wasn't unusual for him to have six or seven sessions each week.
A memorial service at Peachtree Corners Baptist Church on Monday was attended by nearly 600, a testament to the many lives Jackson touched during his short time here.
Both grandfathers told the crowd that despite his hardships, Jackson never had a bad day.
"Jackson had a laugh that would warm any heart ... a smile that would light the darkest days," said Lou Jinright. "We had 2,106 wonderful days with Jackson -- days of laughter and love."
Grandfather Bill Russell said Jackson's attitude made difficult times much more bearable.
"I don't think he ever had a bad day. Even on his worst days of surgeries and treatment, he was always smiling."
Despite his physical impairments, he had an incredible influence on all he met. He made friends around the world. Jackson made eight trips to Barcelona and visited Montreal, Baltimore, Cincinnati, Detroit and Atlanta seeking treatment. At each location, caregivers were amazed at the positive attitude that followed Jackson as he trekked the globe.
"He loved music especially mom's a capella songs. He loved to go to school. He was a great student. He always did his homework. Each day, he did things we thought were impossible," Lou Jinright said at the memorial service.
And Jackson left his mark in other ways.
There is a garden outside the Hudgens Arts Center at Gwinnett Center that is named in his honor.
And the Jackson Jinright Foundation was formed to support the discovery of a cure for PD. The Foundation benefits the Global Foundation for Peroxisomal Disorders, whose mission is to help children and families faced with a diagnosis of PD and to assist family members and professionals through educational programs, research, and support services.
In life, each of us is dealt a different hand. How we play those cards is up to us. Jackson wasn't dealt a hand of aces, but he played the cards he had and the world is better for how he played them.
And despite it all, he never had a bad day.
OUR SON by Travis Jinright
I believe our son was put on this earth to make me a better person, to make all of us better people.
He was put here to teach us the value of life and the strength of love. A love that is eternal in time and infinite in strength.
I see his mother and myself in him when he smiles, a smile that can melt your heart in an instant.
With his big blue eyes, long eyelashes, and crooked grin, to us his smile is love.
It assures us of his place in life, he is our greatest joy, he is perfect.
Jackson is the best of us, he is pure love, he is our son.
I now live with the knowledge that I made my son the way he is. I cannot convey the heartache in knowing that the faults of a father may have terminally committed a son to a sentence of which he does not deserve. These faults are none that I could have changed. Through some greater plan Jackson was passed a gene that has left him unable to process toxins through his body. He was diagnosed with a peroxisomal disorder. This weight sits on me like a rock that cannot be lifted.
If there was any way to exchange my life for his, God knows that I would do it in the single beat of a heart. I have prayed for this. He is my son and he deserves a young life without the complications, tests, constant hospital visits, and daily medications, which he undoubtedly is destined to live.
He knows no other life. To him there is no other life. One day he will realize that he is different than the other kids, and when that day comes I do not know what I will tell him. I can only pray that he will be as strong in the future as I have seen him to be as a baby. He is quite possibly the strongest person I have ever known. Not a day goes by that Jackson does not smile, or laugh, he is the most precious person I think I may ever know.
When he was born I dreamed of watching him play sports, cheering him on from the sideline, wanting so much for him to be a “normal” boy. Now my dreams are entirely different. Now, I dream of having him in our lives for as long a possible. “Do not take him from me,” is what I pray now. I only wish I could stop being so mad when I pray.
You think you understand the love your parents have for you, but you can never really comprehend the magnitude of that love until you have a child of your own. I know that I would do whatever I could for my child, and I’m sure he will never fully understand the love I have for him.
There was a while, after I knew of his disease, when I felt like I was slowly falling apart, one day at a time. But when Jackson began to show real progress, it made me want to spend every minute of the day with him, it gave me a reason to feel hope. There had been nothing but bad news, and when we found out that he could see, we were ecstatic.
Just one positive thing could turn our focus from all of the negative to that one positive thing, and made us able to continue to remain positive. A lot of people question how we are able to stay so positive, under our circumstances, and it is these small things that make our lives worthwhile. A good day, a good morning, a good moment, whatever it is it gives us the strength to believe that if it can happen once, it can happen again.
Jackson was six pounds, eleven ounces and twenty-one inches long when he was born. He had a normal birth other than some minor fluid in his lungs. He spent five days in the neonatal intensive care unit before we could bring him home.
Before he came home, it was as if there was a hole in our lives, which was filled, now that he was home. He was the reason for Angie and my being. When he was hungry we feed him, when he was dirty we cleaned him, when he was lonely we comforted him. All of these things we did without hesitation, and yet he was never happy.
Jackson was classified as having “colic” and “acid reflux,” but to his mother’s credit, she always knew there was something more at work. Angie would say to me that something wasn’t right, “there is something we are not doing for him.” Her fruitions would never have come to be had it not been for our pediatrician who was unwilling to put all her faith in Jackson’s diagnosis of “colic.”
When we first suspected Jackson of having a real problem was at his two-month check up with his pediatrician. He had not gained any weight, so his doctor recommended a blood test to check for any abnormalities. What the test would find will forever affect his life and therefore our lives.
Initially, our concern for Jackson’s well being was only for the elevated liver enzymes detected in the blood test. I remember calling my friend in California, and when he was devastated of the fact that Jackson was in the hospital getting tests, it did not register to me how serious that was. I assured him that everything would come out okay and that they were being extra precautious. Once we received the results, we were immediately admitted to Scottish Rite Children’s Hospital. We spent ten days at the hospital; running tests (what seemed like every 30 minutes.) We left the hospital with no answers. We would have to wait for our outcome. I think the conformation took almost two months.
Angie’s mother, Sherry, and I went to the doctor’s appointment to get the test results. I think that Angie knew that something was wrong and that is why she did not go. It was Jackson, Sherry, and myself waiting. When the doctor told us that the disease Jackson had was incurable, I could not keep the tears in my eyes. While the doctor was talking, I know Sherry was trying to listen to him, but we were both in such shock that we could not even understand the depth of his concerns about Jackson. How do you prepare yourself for that news? You can’t. There is nothing you can do.
Jackson was a small baby, but always strong. He has an unwavering will to live, to survive. He is our world, he is everything.
I cannot begin to know the love of a mother and her child, but I know that Angie’s love for Jackson cannot be matched. He is her sun in the morning and her moon in the night. She lives for our child and savers every moment she is given with him. The night I shared the diagnosis of Jackson’s disease with Angie was the worst moment of my life. Neither I nor Angie was aware to the seriousness nature of what was to come in the following weeks.
I found out of the diagnosis while my parents were visiting. We were in the sunroom of our house after dinner talking, still unaware how serious Jackson’s prognosis would be. When my mobile phone rang, it was about ten o’clock at night. I had asked our doctor to call me immediately with the news.
When she told me of the positive results of a rare peroxisomal disorder, I broke down in uncontrollable tears on our driveway, where I had gone to seek privacy for my call. This disorder has no cure and has little to no treatments, I was told. I had believed so surely that he did not have anything serious. I had not, and could not have prepared myself for what we were about to face. Now I had to tell the rest of my family the news, most of all I had to tell my wife that our child has a disease that at best gives him a life expectancy of around twenty.
It took me about a half hour to collect myself enough to call my dad, just inside the house, on his mobile phone and ask him to come outside. When he did, I could barely get the words out of my mouth before, again, breaking into tears, I told him the devastating news.
I know my father did not know what to say, but what he did say gave me more comfort than I’m sure he could ever know. He just embraced me, as only a father can to his son and said he couldn’t imagine the feelings I was going through, and did not try to tell me that everything would be “fine,” because I’m sure he knew as well as I did that everything would not be “fine.” I can only hope and try to be as good a father to my son as my father has been to me. He has been an amazing man to look up to and someone I strive to be like. Jackson will be so lucky if I am able to provide him with the lasting memories and experiences that my father gave me. Knowing that my own father could not express words to comfort me, made me feel able to try to comfort Angie with only my presence, as my father had done for me, for I did not have the words either. Upon coming inside I believe Angie knew something was wrong. She asked who the call was from and I asked her to come with me outside, so that we could talk alone. When I told her, she reacted with a cry that made my heart break. As I have said before, I cannot begin to understand the love a mother has for her child, but when I told her of the news I can only imagine her heart being broken into a million pieces. She accepted the news at first and then we made our way upstairs and she fell into tears screaming to me “WHY?, WHY?” It truly was the worst moment of my life, because I could not answer her question, I could only hold her.
I did not know “why,” I only knew that our love would have to be strong enough to get us through this. When we came down the stairs, Angie’s parents were at our house, after learning of the news they drove there immediately. She needed more comfort than I could provide.
We have found treatment in Barcelona, Spain. We first went when Jackson was only seven months old. He was so weak and had such hypotonia, that he could barely lift his head. Now he is sitting up and trying to pull up to stand. He still does not crawl, but we hope he will soon. His tone has gotten so much better.
We would have never made our way to Spain, had it not been for my father and mother in law, by chance, being on a trip to Europe and finding Dr. Martinez. They went out of their way and met with Dr. Martinez, interviewed her, and decided she was the best doctor Jackson could see. We talked with her by email and phone, and agreed.
With me working for my father in law, and Angie owning a store with her mom, we were extremely fortunate to be able to pick up and leave the U.S. for five weeks of initial treatment in Barcelona, Spain. I am forever indebted to them for the sacrifices they have made. If you have ever seen Jackson; you would know why they did it. He is the kind of kid that demands love from whomever meets him. He is our angel.
Jackson is now almost ten months old, and is doing quite well. I am torn between feelings of excitement for how well he is doing and apprehension for what will come. I know there has been such good news lately, such normalcy, that something surely will go wrong soon. I can only hope that it is something that we can move past as a family, something we may triumph over together!
One year, it is amazing that a year has passed. So much has happened. I think most parents go a little overboard for their first child’s first birthday, but when you have had doctors tell you that your child may not live to be a year old, overboard goes out the window. We are so excited of Jackson’s progress; he has been almost meeting his milestones. Jackson is truly the strongest person I have ever met or known, he is amazing. And the fact that he is not yet even one compounds his strength. Angie has planned a party with her parents and her brother’s family for tomorrow; I think Jackson will love it. He is really starting to react to people through vocal contact, where as he used to only respond to physical contact.
Jackson is now two. We live everyday with him as if it were our last, we laugh, we cry, we get angry, but we love him with all of our heart. There is a poem about children with special needs, which most parents with these children probably know, called “Welcome to Holland.” It is a poem about a planned trip to Italy, only on the plane to Italy they make an unexpected stop in Holland and they cannot make it to Italy. The poem speaks of the plans they had when they arrived in Italy, what they would do, what they would see, but now there are in Holland and will not make it to Italy. They are not upset, they only have to change they’re plans, what to do, what to see, what to enjoy. It is not as if Holland is a bad place, it is just a different place, still beautiful, still wonderful, still better than they could have ever imagined. And that is where we are with Jackson, we are in Holland.
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Jackson is now three. His doctor in Spain has passed away. She was our strongest hope in giving him the treatment he needs. We are confronted now with where to go from here. There are so few doctors in the world that even study Jackson’s disease, we must use what we have learned from Dr. Martinez to push more research into this field of study.