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home : community : community January 29, 2022

11/26/2014 1:17:00 AM
Giving Thanks In The Face Of Trials
The Fergusons Thanksgiving baby is dying
John, Kate, Wendy & Abby at their Dallas home in August--the Fergusons adopted Kate about the same time that Abby's diagnosis was confirmed.(Lincoln Herald Staff Photos)
John, Kate, Wendy & Abby at their Dallas home in August--the Fergusons adopted Kate about the same time that Abby's diagnosis was confirmed.

(Lincoln Herald Staff Photos)
Abby was able to join her father in attending the Dallas Historic Courthouse dedication on Sunday, November 16th.  She was excited about her birthday coming up on the 29th.
Abby was able to join her father in attending the Dallas Historic Courthouse dedication on Sunday, November 16th.  She was excited about her birthday coming up on the 29th.

Wayne Howard

Thanksgiving: a time to be thankful for our blessings...

On Thanksgiving 2004, John & Wendy Ferguson were awaiting the birth of their first child.  Four days later, on Monday, November 29th, Abby Grace was born.  

The Fergusons were thankful that their baby girl was born healthy.  

Abby grew normally, learned to talk, got potty-trained...all the normal things.  Then, as she became four and then five years old, it became apparent that something might be wrong.

Abby wasn't growing quite as quickly as other children her age.  Maybe she was just a late bloomer--waiting for a spurt.  They decided they had better have the doctors check.  By the time she was in the second grade, it was evident that there must be a more serious problem, but what was it?  

Finally, doctors at UNC Hospital in Chapel Hill gave the Fergusons the diagnosis that confirmed that Abby had a serious disease--one that has a 100% mortality rate, usually by the teen years.  Abby has Sanfilippo Syndrome.  

Sanfilippo is a genetic deficiency that can be passed on to children when both parents have a recessive gene.  There's a 25% chance that their child or children will be afflicted with the condition.  The bodies of children with Sanfilippo, also known as MPS III, cannot process complex carbohydrates.  We say 'children' because there are very few adults with Sanfilippo.  Nobody with Sanfilippo makes it beyond their 20s.

Waste material builds up in the brain.  As the disease progresses, children develop extreme activity, restlessness, sleeplessness, and often difficult behavior. Language and understanding will gradually be lost. Some children never become toilet trained, and those who do will eventually lose this ability. Over time, children with Sanfilippo syndrome become unsteady on their feet, tending to fall frequently as they walk or run, and eventually lose the ability to walk. Some parents report episodes of muscle spasms, dystonia (sustained muscle contractions), or continuous jerking movements. These may or may not be linked to seizures and can be difficult to treat. As Sanfilippo syndrome is a condition that worsens over time, all individuals will experience progression of symptoms regardless of initial disease severity.  

Most parents look forward to their children progressing toward adulthood.  For John & Wendy, they're watching Abby slip in the other direction.  Unless a cure is found, they already know what the future holds--and this Thanksgiving, they're not looking forward to what lies ahead.

The Fergusons and other parents of children with Sanfilippo are trying to raise money for clinical trials of gene therapy that has shown some success in tests on mice but has not been tried on humans.  Genetic engineering appears to be the best--probably only--answer.

The big drug companies aren't funding Sanfilippo research: there's no money in it.  Only one in 70,000 babies is born with the condition.  That makes for an extremely small market.  There are millions of dollars to be made with drugs for cancer, diabetes, etc.  Without the lure of possible profits, the drug companies aren't interested in Sanfilippo.  

The same can be said of government funding--although for a different reason.  Sanfilippo affects only a small number of people while cancer and other diseases affect millions.  The government is putting money into research into treatments or cures for more widespread problems.

The clinical trial on humans will cost at least $2.5 million.  With no rich benefactor to pay for it, parents of children with Sanfilippo are trying to raise the money.  

John & Wendy created the Abby Grace Foundation, a 501(c)3 charity.  They've held a variety of events to try to raise money for the research, but time is running out.  Abby will be ten years old on Saturday (Nov. 29th).  Her decline has already begun.  It will only get worse.

Wendy Ferguson says she's still thankful that God gave her Abby.  She says the thought of losing her isn't the worst part: it's knowing what Abby will have to endure as the disease progresses.  

We would suggest that one very appropriate way of showing your thankfulness for your blessings this Thanksgiving would be to make a contribution to the Abby Grace Foundation.  

If enough people give enough money the clinical trials can get started.  They may or may not save Abby's life, but they may save the lives of other children with Sanfilippo.  Then we'll all have one more thing for which we can be thankful.

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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.

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 is 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.

*Please visit Abby’s Facebook page at to learn more about her progress and fight for a CURE.

*To learn more about Sanfilippo Syndrome, please visit or

*If you are interested in donating towards a CURE for Abby, please visit her Go Fund Me page at All donations are tax deductible and 100 percent goes towards research and finding a CURE for Abby.

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