The Fergusons attend First United Methodist Church in Dallas. This photo is from Bible School in June 2014. "The first night was dedicated to Abby and Sanfilippo awareness," Wendy said.
(Photo Courtesy of John & Wendy Ferguson)
Wayne Howard News Journalist
Until our friend Sgt. Kelly Stewart told us that the Abby Grace Foundation was one of the three charities vying to become the one selected to receive funds from the NC Trooper FootChase 5K to be held next March in Conover, we weren't familiar with Abby Ferguson or her condition.
At a glance, Abby Ferguson looks like a normal first-grader getting ready for back-to-school...only problem with that is Abby is going into the fourth grade at Costner Elementary School in Dallas. Abby has a condition known as Sanfilippo Syndrome. It's one of a group of rare diseases called mucopolysaccharidoses (MPS). Specifically, it is known as MPS III. The name Sanfilippo comes from Dr. Sylvester Sanfilippo, the pediatrician who first described the disease.
It's a rare ailment--one of which you may never have heard. Sanfilippo syndrome is only seen in about 1 in 70,000 births.
The syndrome is inherited as an autosomal recessive trait. If both parents carry the defective gene related to this condition, each of their children has a 25% chance of developing the disease.
Abby Ferguson was John and Wendy Ferguson's first child. During her early years, everything seemed normal. That's not uncommon with Sanfilippo. Children with the disease begin normal development. Then, as time goes by, their bodies' inability to process complex carbohydrates starts building up waste material in the brain that causes reversal of development. Children who have learned to walk often lose the ability. Post-potty trained children revert to lack of control. Children who have learned to talk sometimes lose the ability. Intellectual development reverses.
The Fergusons didn't know that Abby had Sanfilippo but they started noticing problems when she was 4-5 years old. Her growth seemed to have stopped and she seemed to be falling behind other children her age. They didn't immediately learn the cause of the problems. The disease is rare--not something doctors see very often. They kept looking for answers: after a long ordeal wondering what was wrong, they finally got the heart-breaking answer: Abby has Sanfilippo.
Wendy Ferguson told us that Abby is fortunate that her case is milder than some. She attends some special ed classes, but she also attends the regular classes at school. John and Wendy said the other children in her classes have been considerate of Abby. Her mental ability is that of a five-year-old--although she'll be 10 come November 29th. Because of Sanfilippo, it's headed the wrong direction.
Sanfilippo is always fatal--at least so far. Most children afflicted with Sanfilippo die in their teens; some die younger. Wendy said gene therapy testing has been done on mice with good results, but so far there has been no human trial. The Fergusons, like many other parents of children with the condition, are trying to raise money for research and a possible cure. Their biggest problem is: they're running out of time.
Wendy is a nurse. She worked at Gaston Memorial Hospital in Gastonia (now CaroMont) for ten years; then went back to school and now works part-time in the emergency room at CMC-Lincoln. John works in risk management for Wells Fargo. They have another child, Kate. She is 16 months old. The Fergusons adopted her last year--about the same time as Abby's diagnosis was confirmed.
The Fergusons set up the Abby Grace Foundation--a 501(c)3 charity--to raise money for research. They also created a GoFundMe page trying to raise $25 thousand with that effort. You can visit that page and see a video that tells Abby's story at http://www.gofundme.com/abbygracecure.
Thankfully, most of our readers--like us--can sympathize, but not truly understand just what John & Wendy are going through as parents. On a website called Strengthening the Soul, Wendy wrote the following in late June:
“Mom, can I go, can I go, can I go?” is all I heard over and over again. My daughter, the daughter who is dependent on me and is rarely out of my sight, wanted to go next door to play with two little girls in our neighborhood. My husband and I kept looking at each other, then back at her, not sure what to do. She had a begging, pleading look on her face, wanting to go and play, just like the other girls. She is at the age of wanting to break away and feel independent. But how could I let her go? How could I trust that she would be safe and make good decisions? Although she is 9, her mental age is that of a 5 year-old. We have never felt comfortable with the idea of letting her go and play without one of us there. I had all of these…what ifs? floating around in my head.
For all of Abby’s 9 years, I admit that I have been a very protective parent. Even before we knew she had special needs, let alone a terminal illness, I found myself trying to protect her from actual and “my perceived dangers.” When I say “my perceived dangers”, I am referring to any and every possible harm she could come in contact with. Being an Emergency Room Nurse can give you a heightened awareness of every possible danger that a child could suffer. I could foresee the smallest danger and knew that it could lead to a tragedy. I did not worry myself sick, I just tried to make the best decisions when it came to Abby’s safety.
After we realized that Abby had a developmental delay, another mommy protective mechanism kicked in. I began feeling concerned about her being bullied, left out or made fun of at school. One particular day in early grade school, I went to eat lunch with Abby. I was standing in the lunch line with her and a little boy turned to me, pointed at Abby and asked, “she does not know very much does she?” I had to hold back what I really wanted to say. What came out of my mouth was “what do you really know at your age?” He did not say anything and turned back around. I looked at Abby and felt a wave of relief. She was holding her tray, standing on her tippy toes, checking out the food selection. She was not even affected by his comment. The beautiful thing about Abby is that she is innocent and simple. She does not even realize that she is intellectually different from her peers. She thinks she is just one of the girls.
“Mom, can I go, can I go, can I go?”
It was nearing dark on this particular night and the mosquitoes were out. Have you heard about the latest mosquito-borne virus that has just reached the United States? Well, I have and it sounds terrible. Once again, my motherly, ER Nurse self kicks in. I ran inside to get the Avon mosquito spray to put on Abby (the spray that I researched and decided was the best for kids). When I got back outside, she was gone. She had already run next door to play. Aside from feeling panicky, a part of me was really happy for her because it was almost as if she was “just like one of the girls”. I kept looking over the fence, checking out what she was doing. As worried as I was, I loved hearing the giggles and laughter from the girls. Even my husband messed around in the yard doing little things so he would be close, right there in eyesight and earshot.
Later after Abby came home, I quizzed her about her independent night of fun. She was so excited and already had the rest of the week planned with the girls. I felt so happy for her. She got to experience what is felt like to be just one of the girls, playing outside until dark, without her parents playing with her or watching over her. It felt refreshing to let her go for just a little while. Deep down I knew she was safe, I just had to let her go.
As I was giving Abby her bath that night, I couldn’t help but notice a new mosquito bite on her leg. Then I noticed how extremely dirty her feet were. I stopped bathing her, sat there for a few minutes and smiled. It really felt like she was just one of the girls.
The Fergusons and friends are holding a Carnival for a Cure event in downtown Dallas on Saturday, September 20th. They'll have food, music, games, a silent auction and more. It will take place in front of First United Methodist Church at 301 West Main Street in Dallas from 11 AM until 4 PM. There's a Facebook page for the event at https://www.facebook.com/events/770367893002926/?ref=22.
I hope that my sharing of a few moments with John, Wendy, Abby and Kate Saturday (Aug. 17th) at their home and sharing their story with our readers may have some value. I will join the Fergusons and their friends in praying for Abby and all the other children with this dreaded condition. I will make a contribution to the Abby Grace Foundation and I hope many of you will, too. I hope that a cure will be found and Abby will survive for many years to come, but if she does not, I will pray that her life will help others. I told Wendy Saturday that when I first heard about Abby and read some of what Wendy had written, I was reminded of a book I read many years ago written by Dale Evans about one of her and Roy Rogers' children called "Angel Unaware."
Since I can only tell the story of Abby from a third party point of view, I want to share something else Wendy wrote, called "My Greatest Sorrow is My Greatest Joy." The Fergusons and I have in common that we own a very old black Lab--mine, soon to be 15 is named Boo; theirs named Trigger just turned 14. Larger dogs don't usually make it that long--most children do; I pray that Abby does.
My Greatest Sorrow Is My Greatest Joy
“Enjoy the little things, for one day you may look back and realize they were big things.” — Robert Brault
She’s dying. My 9-year-old daughter is dying. Today I can say it without crying, but not necessarily tomorrow. Each day is filled with up and down emotions. Some days I am hopeful for a cure, but many days I am filled with despair and an indescribable sadness. My heart aches. My tears burn. My head and my body are tired.
You see, my daughter Abby was recently diagnosed with a rare, genetic disease that is terminal. There is no cure or treatment. No cure. 100 percent terminal. Every child diagnosed with this disease will die. I have never felt so helpless. As mothers, it is our job to nurse our child’s boo-boos, dry their tears, teach them how to deal with sorrow and upsets and give them hope for a future filled with success and happiness.
Abby looks like a typical, healthy 9-year-old, but her little brain is slowly fading away. She was normal in her development and met the usual childhood milestones until age 4 or 5. She then started to show a decline in her cognition and learning ability. We went through years of testing to find out the cause of her developmental delay. What we found out was worse than anything we could have imagined. She was diagnosed with Sanfilippo Syndrome, a rare disease that we passed on to her. How could that be? How could our precious daughter be born healthy and at age 8 we find out she is not healthy at all? She was born with ten fingers, ten toes, passed her screening tests, walked, talked, potty-trained on time and was very outgoing. We just did not understand.
Her disease causes progressive brain damage. She will lose her ability to walk, talk and feed herself. She will more than likely lose her hearing and have seizures. Most children diagnosed with Sanfilippo Syndrome do not live past their teenage years. Aside from losing her, our biggest fear is watching her suffer. The thought of watching her lose abilities that she once had slowly fading away just makes my heart ache even more.
There will be no driver’s license, prom, graduation, college or wedding. My husband will not get to teach Abby how to drive or walk her down the aisle, I will not get to pick out a prom or wedding dress with her, we will not visit colleges and we will not get to revel in her children. These are things that we are gradually learning to let go of. As parents, we just assume that most of these things will be in our child’s future.
Needless to say, we have done a lot of praying, researching and connecting with other affected families to try and find our way through this life-changing event. Through all of the sadness and sorrow of the past year, we have been privileged enough to gain new perspectives on life. We found strength we never knew we had. Our faith has grown even stronger. We have learned not to take each other and each day for granted. Our relationship with each other has been strengthened. We rely on each other so much more to get through daily life with a special needs child. Our lives are filled with difficult conversations, making dreaded decisions, explaining her illness to people, never-ending doctor’s visits — things that most people just can’t understand.
The most important lesson that we have learned through this is that we have to live one day at a time. I used to be a planner and thought I knew the path my life would take. As little girls, most of us planned our entire life, down to how many kids we would have. I used to think I would work a particular job, live in a particular house, in a particular neighborhood, have two kids, two dogs and have a pool with a cute little fence around my house. Since Abby’s diagnosis, my husband and I both changed jobs so we could spend more time as a family, we sold our dream home and down-sized and we moved closer to our extended family. Our lives have done a complete turn-around.
After Abby’s diagnosis, we live by the cliche, “enjoy the little things, for one day you may look back and realize they were the big things.” Now, I just want to enjoy a smile, a hug or a laugh from my daughter. I want to sit with her and play. I want to help her brush her teeth, wash her hair and put her shoes on. I can’t take enough pictures of her. We celebrate the smallest accomplishments as if she won an Olympic medal. I am aware of what the future holds for her but try not to think about future milestones. It is too painful. I just want to live in the moment and enjoy her right now, the way she is.
*If you are interested in donating towards a CURE for Abby, please visit her Go Fund Me page at www.gofundme.com/abbygracecure. All donations are tax deductible and 100 percent goes towards research and finding a CURE for Abby.
LincolnHerald.net-- Your Lincolnton-Lincoln County Online News Source for News, Sports, Opinion, Obituaries, Religion, Classifieds, Events, Photo, Community, Coupons, Live Cameras and Police Scanner.
Serving the areas of Lincolnton, Denver, Maiden, Stanley, Alexis, Vale, Crouse, Iron Station, High Shoals and Cherryville and other nearby areas of Lincoln, Catawba and Gaston counties. Not a newspaper, not a magazine, we’re online – on your computer at home or work, on your smartphone… with news and more 24 hours every day, seven days each week, every day of the year including holidays.