Jordan (Jo Jo) Rae Giles was born in Everett Washington on January 17, 2015.
She just turned 4 years old.
She loves Harleys and motorcycles.
She is smart and beautiful and a bright light to so many.
She is teaching everyone she encounters - what strength, bravery, and love look like.
In February 2018, after 2 years of tests - JoJo’s family was told that she has Leigh Syndrome .
It is a rare progressive degenerative disease.
It can cause blindness, deafness, seizures, loss of mobility, loss of speech, enlarged heart, feeding problems, breathing problems, liver problems, kidney problems...and more...and has a typical life span of 2 to 3 years, although she has been given a median life span of 5.5 years.
She was only the 17th ever in the world with her particular mutation. And only 3 (including her) are still alive.
JoJo has optic nerve atrophy, alopecia, ataxia, hypermobility joint disorder, nystagmus, hypotonia, and at least 7 brain lesions.
She has to be seen at Seattle Children's Hospital every 6 months by biochemical genetics, neurodevelopment and endocrinology specialists, cardiologists, ophthalmologists, nutrition specialists, physical therapists and speech therapists. She attends a developmental preschool where she has a one on one para support assistance and receives braille classes, PT, orientation and mobility.
JoJo's dad, Donnie, and her mom Jessica, have always liked Harleys.
Her dad would have her listen to the different sounds of motorcycles and she would hear a Harley while driving down the road and start looking for it and get excited.
JoJo had a little pink Minnie Mouse 4 wheeler that was her "bike.” Last spring, and only a couple of months after getting diagnosed with Leigh Syndrome, her mom suggested that maybe she could turn it into a Harley.
She decided she wanted to use her piggy bank money to get paint and stickers to make that happen so they ended up at "the Harley store" (Sound Harley-Davidson ) to get stickers for her bike and the employees fell in love with her.
Over the past year, she has come into the shop to visit when she can and loves to go count the wheels of the bikes in the store.
The staff looks forward to her visits and have adopted her into their Harley family.
Recently, Sound Harley, along with the Pacific Northwest HOG chapter #2053, helped her fulfill one of her dreams:
Not only getting to join a real Saturday ride with other Harley riders, but to lead them as their Road Captain!
A few dozen riders followed JoJo around the Sound Harley-Davidson dealership as she rode her own motorized Harley scooter at the lead.
JoJo gets fatigued easily, so just once around the building was all she could manage - but it was a dream come true for her.
Now, we at Sound Harley would like to continue to help JoJo and her family as they navigate the hardest journey of their lives - by starting a fundraising campaign that will help them with medical expenses, fund a family trip to Disneyland before JoJo is no longer able to walk and to help them move into a one-story home where JoJo can have a bedroom on the ground floor and doesn't have to struggle or crawl to get up the stairs.
Currently, the family is renting a two-story home but hopes to purchase a wheelchair accessible home with all of the rooms on the same level so that as JoJo's body continues to struggle and her motor skills begin to deteriorate, she will be able to still have some independence.
We would like to invite you to help us support JoJo in the longest and hardest journey of her life.
Every dollar helps.
Thank you for reading her story.
For JoJo's full story as told by her mom Jessica - please read on below:
Jo Jo was born in Everett Washington on January 17, 2015. She was a healthy baby and weighed 8 pounds 4 ounces.
She was growing okay and hitting her milestones during her first year of life. She is very smart and learned to communicate using up to 56 different signs of sign language before she started to talk.
There were a few things that were slightly off; however, and they would only make sense 3 years later. As an infant Jordan would have weeks of unexplained vomiting. When she was introduced to solids she would gag and throw up. She was very “floppy” and would seemingly feel as though she would slide through our arms if we did not have a good grip on her. She would lose patches of her hair and have bald spots. She had unusual eye shaking movements. She would tremor a little in her hands and legs after waking up or when reaching for something.
At her one-year checkup, she stated to chart a little small and the doctor noticed the eye movement.
At her 18-month appointment is when things got really noticed that some things were just not “normal” for Jordan’s growth and development. That is when more appointments started happening.
They thought it might be a good place to start in a few different areas. PT and an MRI on the top of the list. The next 2 years were full of doctor appointments.
First was some physical therapy because Jordan was not walking. They put her in her first pair of “doctor boots” (Ankle[-foot orthotics. AFO’s) and stated that she had some global developmental delay in her physical abilities, but that she was more articulate than other children her age. They diagnosed her with hyper-Joint mobility disorder (unusually stretchy joints) and hypotonia (abnormally low muscle tone, weakness), and Ataxia (poor coordination due to the brains failure to regulate the body’s posture).
Then she was seen by the dermatologist who diagnosed her with alopecia (Autoimmune disorder where the body attacks its self and hair follicles.)
We took her to get a sedated MRI. That was scary watching this little toddler get sedated. But we wanted answers. Answers would help us treat the problem. Answers would help us fight back whatever was going on.
The MRI Showed that Jordan had 3 different spots on her brain, which they called brain lesions. This was shocking! What is a brain lesion? Why does Jordan have that? We were sent to neurology. Neurology told us it was a one-time event and probably not progressive. That somehow Jordan got brain damage and they could not tell us when or how or why.
Next was pediatric ophthalmology where they looked further into her eye movements. She was diagnosed with optic nerve atrophy (permanent visual impairment due to damage to the optic nerve, which is the cable behind the lens of your eye that carries the message of what you see to your brain) and she was diagnosed with nystagmus (rapid involuntary movements of the eye). They also stated that her brain damage was probably a one-time event and not a progressive disorder. Again, we thought to ourselves, "but why does she even have brain damage?"
No one was able to answer that. Was it because of where I worked my entire 9 months of pregnancy (green house) ? Was it because the cord was briefly around her neck at birth? Still no one could answer us. They all just kept stating it was some event that happened and the damage that’s done is done. Let’s just test Jordan for a few things and see where and how she grows and develops with it.
It was a false sense of comfort.
Then a few months after her MRI, we got a call saying that one of the radiologists thought the findings on the MRI could be consistent with a rare disorder and we should go visit Biochemical genetics.
Someone saw something!
Something they went back to re look at and thought it might be important to readdress. We are thankful for that person.
We went in to Biochemical genetics and they explained who they are and what they do. They were explaining rare disorders and how certain kinds can show up in a particular pattern on an MRI. They were leaning to the possibility of Jordan having a mitochondrial disorder. It was a lot of big words and complex concepts. More testing would need to happen, and more blood tests would need to be done.
During the summer between Jordan’s second and third birthday, she woke up one day with a tremor. Her whole body would not stop shaking and tremoring. Her head and body were in a non-stop osculation type motion for about 2 to 3 weeks. She could talk okay, but she went backwards in her abilities to walk and play and was more unsteady and weaker.
Biochemical genetics decided it was necessary to do a repeat sedated MRI and genetic testing. Their suspicions of this being a mitochondrial issue were growing.
Again, we went in and had Jordan sedated for another MRI. The results were not good. They found that the original 3 brain lesions had grown, and they found 4 more lesions on Jordan’s brain, indicating a progression.
This was starting to get real and real scary. It was 3 months in between MRIs. If her brain damage grew and multiplied in 3 months, what are we looking at here?? We needed the results of the genetic sequencing in order to get a diagnosis.
The blood test took another 3 months. A very long 3 months. Is more damage happening? This was the constant thought. 3 months to get the results as they had to sequence her whole DNA.
It was a LONG wait.
The day we found out her main diagnosis, the cause of all the other diagnosis and the answer we had been waiting for… was traumatic. It was so important to find the answers so we could fight the problem. This was it!
It was Thursday, February 8th 2018, just a couple weeks after Jordan’s 3rd Birthday. The geneticist called Donnie while he was at work driving a UPS truck and then Donnie called me while I was in a meeting.
I can still hear myself outside of myself, screaming.
I remember the agony in Donnie’s voice and the words “Leigh Syndrome...it’s bad…she is sick….she is only expected to live maybe 7 to 10 years…she is going to die…I don’t want to bury my baby….”
The rest of that day was a blur.
The next day was Friday, February 9th.
We went to meet with the Geneticist. We were somberly ushered in to a meeting room. In walked a group of doctors, nurses, counselors, geneticists all with their heads hung low, and all saying the words “I’m sorry, I’m so sorry” - it was surreal.
These masters of medicine telling us they are sorry because our daughter has something serious. Prognosis is poor they said. That what Jordan has, has no cure and no treatment.
This was real now.
No Cure, no treatment, no way to fight back!!
This was the heartbreaking point for us. She has something that is a very rare progressive degenerative disease. They told us the average life span is typically 2 to 3 years and some have been known to live to 7 to 10 years and yet some other cases of adolescents.
Jordan, however, has a rare form and was only the 17th person in the world to have her particular gene mutation and that out of those 17 only 3 (including her) were still alive.
They just don’t know enough. They said “sorry” over and over with no hope in their voices. Donnie told them though, that God is the one in control.
Jordan’s Leigh Syndrome is a mitochondrial disorder. That is a mutation in her cells. The same cells everyone has in their body that takes food and oxygen and produces energy, is defective in Jordan. The progression is continued brain lesions (brain damage) and as a result, can cause multi system loss of function.
One day the damage in her brain will not tell her lungs to breath or her heart to beat.
Because it is the energy in her body that is affected, being sick is detrimental to Jordan. Her body’s natural systems work to automatically fight being sick or infection of any kind. The result is that the energy of her cells then do not do their daily job of forming normal healthy tissue.
Brain tissue, eye tissue heart tissue is all affected. Her heart can also become enlarged due to over working the body’s energy.
The best way to really grasp the concept, is like her whole body is ALWAYS operating on a battery that is not fully charged and that annoying beep when the battery is almost ..well you know. Anything extra you try to do while your phone is in that spot - like take a picture or download something, it just makes it drain faster.
Her poor little battery just can never be fully charged due to a broken circuit board.
So now our whole life has changed with how we go about things. We take precautions to keep her as healthy as we can. We Clorox wipe like crazy! We use hand sanitizer and Lysol a lot. Everyone in the house is on a daily doses of vitamin C.
JoJo wears a mask a lot to help protect her. We did decide that we would do what we could to protect her, while at the same time try to give her the best quality of life, we can without completely putting her in a bubble. We do always ask if people she closely interacts with are sick to make sure they keep their distance. If we have a family get together we always send out the “how is everyone feeling?” or “anyone sick this week?” messages. Everyone knows now and respects that.
Jordan is a bright 4-year-old toddler that is caring and kind and happy. She doesn’t really know what is happening to her and just wants to love on her babies, play with her puppy, spend time with her siblings, spend time with us. She loves to pray for and help other people. She has so much compassion for others. It's amazing how smart she is for 4!
We know God has a perfect plan for her whole life. He has a whole plan for our lives. He is the one in control of each breath and all life and every circumstance. We just spend each day with Jordan blessed that we have that day. Every single day is a gift. We want to share our story, not for us to receive a hopeless “I’m sorry”. We want to share our story so that when others face the impossible with no way to fight back, they too can find peace and comfort in God plan for them. That God is in control.
Thank you for taking the time to read JoJo's story. Our story.