Adults could learn a lot from eight-year-old Albert Hayes, who has continually made the best of his circumstances, despite several setbacks, after a year of treatment.
Albert was diagnosed with Hyper IGM Syndrome at the age of three, a condition that leaves his immune system unable to fight off even mild viruses and bacteria.
For Albert, this means that even the normal illnesses of childhood can be deadly, and until recently, most children with Hyper IGM Syndrome lived only a handful of years, but bone marrow transplants have a chance of extending the lives of Hyper IGM children.
A donor was found, and Albert received a bone marrow transplant one year ago.
Preparation for transplant involves using chemotherapy, which left his body weakened enough that he has had to fight off two recurring viruses.
One virus, cytomegalovirus (CMV), proved particularly troublesome and resistant to medication.
To fight the CMV, doctors activated his new immune system, but this led the donated marrow to reject his body, known as Graft Versus Host Disease (GVHD), making Albert very sick.
This has resulted in a not-so-delicate balancing act. In the process of encouraging his body to accept the donated bone marrow, the CMV resurfaced, causing Albert to lose his vision in one eye and endanger the other.
Albert’s mother Cindi Hayes said that while his recovery has not been easy, Albert handles down moments as they come and tries to make the best of it.
A recent example his mother gave was following the first treatment to save Albert’s vision four months ago:
“Of course Albert woke up alone, frightened and unable to see. He was crying in a very panicked and agitated tone, ‘I am blind, I just want to see.’ And without missing a beat he asked, ‘If I am blind, can I have a seeing eye dog?’”
Since then, Hayes said that Albert receives eye injections to preserve his vision and strong anti-viral medications to fight the CMV.
“For the most part, Albert’s own immune system will have to kick in and fight CMV on its own,” Hayes said.
Albert has been actively involved in his own treatment as well, his mother said.
“Children who endure long-term medical treatment seem to grow up quickly,” his mother said, and Albert has been asking questions regarding his treatment and condition.
“When someone does something that he does not believe is correct, he speaks up,” Hayes said.
When the retinal specialist came by to examine Albert’s eyes and evaluate the situation for treatment, Hayes said that Albert was, “right there asking questions and giving his ‘learned’ opinion about what they could do. He was not complaining, he was not upset, just very interested in his treatment.”
Hayes said that it has been difficult, with repeated trips to the hospital and no end in sight, but Albert has kept busy with events at the Ronald McDonald House, the Child Life staff at his hospital, and a summer school program, during which his teacher took advantage of Albert’s intense interest in science to teach him other subjects too.
“We truly appreciate it when we receive cards, e-mails, special gifts and well-wishes from our Eunice family. Please continue to pray for Albert to have the patience and strength to continue with what has turned into a long healing process,” his mother said.
Albert’s email address is email@example.com.
Anyone wishing to donate to Albert’s ongoing medical expenses can do so at St. Landry Bank in Eunice, under Albert’s Medical Fund.
“Again, please continue to pray for Albert and the many children and their doctors in hospitals everywhere,” Hayes said. “These children teach us every day that life is precious and should be enjoyed even under the worst circumstances.”