For more information on the United Mitochondrial Disease Foundation, go online at www.umdf.org, or call the Atlanta chapter at (678) 430-3773.
Editor’s note: FCN columnist Adlen Robinson has written about mitochondrial disease and local children who are battling it several times over the past five years.
Wendy Sundgren hopes that by sharing her family’s story she can help raise awareness of a disease that robbed her son of a full and long life.
Like so many other people, she and her husband, Chris, had never heard of mitochondrial disease, or mito, as it is often called, until a few years ago. That’s when the Forsyth County residents’ son, Hudson Tyler Sundgren, was diagnosed.
While it may not be a household name, a child who will develop the disease is born every 30 minutes, according to the United Mitochondrial Disease Foundation. And 1 in 4,000 are diagnosed with the disease by age 10.
On May 5, Hudson lost his battle, passing away in his father’s arms. He was 5.
Sundgren said doctors had given their son just a few years to live, so she feels blessed to have had him twice that long.
“I have learned more from Hudson and am grateful I had him,” she said. “We have learned so much about being patient, having empathy for others, and what true love is all about.”
Sundgren said the family knows what it is like to feel helpless as the disease progressed and ultimately took their son’s life. Even so, they have never been closer.
“Our family is stronger because of Hudson,” she said. “Going on this journey teaches you many things if you will let it, certainly giving you an appreciation for life as it is.
“Even with all of the challenges we faced, I would do it all over again for the opportunity to be with our son.”
‘They began testing him for everything’
When the Sundgrens held Hudson for the first time, their lives seemed picture perfect.
“Hudson was a beautiful baby, more than 6 pounds and 19 inches long,” Wendy Sundgren said. “Everything went great and I had no complications during his birth,” remembered his mother.
Big brother Jackson, who the young couple had welcomed more than four years earlier, was especially excited.
“Jackson was a wonderful brother from the very beginning,” she said. “He was so thrilled that he had a little brother.”
For the first few months of Hudson’s life, everything seemed normal. He babbled and rolled over on schedule.
Still, his mother noticed he would not move his right leg.
After many trips to doctors, surgery for a hip out of socket, and months in a full hip cast, the Sundgrens hoped the problem was solved.
The recovery, which was supposed to be fairly quick, did not seem to be happening.
While the parents tried to decide on their next step, little Hudson suffered a seizure in 2006 that caused him to turn blue.
The terrified couple knew something more serious was going on.
“We took him to a neurologist and that is when they began testing him for everything,” Sundgren said.
The tests revealed that Hudson had multi-focal epilepsy and had seizing all over his brain, but they could not tell what was causing it.
“We didn’t know what half of the things they were testing him for were,” she said.
Meanwhile, Hudson continued having seizures. After ruling out one possibility after another, the Sundgrens were referred to a geneticist, who suspected Hudson had mitochondrial disease.
‘Try to treat the symptoms’
Sundgren said the only way to get a true mito diagnosis is “by having a muscle biopsy and spinal tap.”
“It is such a devastating diagnosis because there is really nothing they can do except try to treat the symptoms,” she said.
There are numerous disorders under the mitochondrial “umbrella,” which result from failures of the mitochondria to properly do their job.
Mitochondria are specialized organelles, or compartments, in every single cell of the body, except red blood cells.
Mitochondria are responsible for creating most of the energy needed by a person’s body to sustain life as well as support growth.
When mitochondria fail, the cells are injured and can eventually die. Systems can fail or shut down, and the life of the person becomes severely compromised.
Mitochondrial disorders seem to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.
The symptoms, which depend largely on which cells are most affected, include a variety of possibilities.
They range from loss of motor control and muscle weakness and pain to gastrointestinal disorders, respiratory complications and seizures, among others.
In Hudson’s case, the disease caused his spine to curve, which eventually began affecting his ability to breathe.
The family began giving Hudson oxygen at night. By December, the 4-year-old was on oxygen full time.
“We knew he was getting worse,” Sundgren said. “My mother and I said we thought that would be his last Christmas.”
Her older son, Jackson, told her at Christmas that he wished he could have the same little brother without the disease.
“Jackson was always so good with Hudson,” she said. “He was always sweet and gentle with him and helped out so much.”
While the sorrow lingers, the Sundgrens are grateful for the many friends they made through the tight-knit mito community.
“These families go through so much and are such a source of strength and support,” Sundgren said. “It is so important to have people around you who can relate to the trials you undergo.
“There is such a need for more research to find out what causes mito and how to cure it.”