New Hampshire parents urge people to donate following son’s rare diagnosis

 By David Ullman, Red Cross writer

A single blood donation is approximately one pint – or 16 ounces. It would fill two coffee cups. That pint of blood may be used for surgery or to treat a trauma patient. It may also be separated for its components: red blood cells, plasma and platelets.  

The plasma, when combined with the plasma of thousands of other donors, is used for IVIG, Intravenous Immunoglobulin, a therapy used to treat antibody deficiencies related to immune-mediated diseases. Every four weeks, four-year-old Lucas Tefler, of Manchester, New Hampshire, receives an IVIG treatment. 

At just two years old, Lucas started having tremors. As his muscle control continued to deteriorate, the little boy was admitted to a local children’s hospital where he was diagnosed with post viral ataxia, a disease that affects muscle control including speech and eye movement.

The recommended treatment was to allow the patient’s body time to reset itself.  

“We were thrilled that it was a minor ailment, not a long-term impact diagnosis,” said Lucas’ mother, Sara Telfer.

But to the Telfers’ dismay, time did not heal Lucas. His tremors increased and new symptoms appeared.  He lost the ability to walk, his eyes movement became erratic and his speech regressed. Additional testing resulted in a new diagnosis.  Lucas had neuroblastoma, a pediatric cancer. His body’s immune system fought the cancer but, in the process, also attacked his brain, causing opsoclonus myoclonus ataxia syndrome, or OMAS. OMAS is an autoimmune disorder that can be triggered by a tumor or neuroblastoma.

Sara and Gavin Telfer realized that whole blood would be used during their son’s surgery to remove his tumor and that Lucas would need IVIG treatments for the foreseeable future.  

“All we really knew about it was it was a blood product,” said Gavin, Lucas’ dad. “At that same time, you hear about shortages of blood and plasma. IVIG is made predominantly out of plasma donations. That was probably the moment we really started to pay closer attention and to do a little bit more research.” 

Sara added, “That was going to be a big part of his life and his story. That really drove the point home for us. A lot of people were asking how they could help. We couldn’t think past tomorrow, in terms of how people can help. But blood donations felt like a very tangible thing. We’d ask, ‘Can you donate blood? Can you donate plasma? Can you do platelets?’”

In addition to putting the call out to friends, family and co-workers, the Telfers became regular blood donors too. 

“People would be surprised at the number of people who have had a need for blood or blood products in their lives. It comes up in so many facets that it's understated.  I think if anybody asked within their network, they would find a handful of folks who have needed blood in during their lifetime. It is a much more personal connection than folks even recognize,” said Gavin.

After creating a social media presence to share Lucas’ progress, Sara heard stories of community donor groups. 

“When my stepmom was starting to talk about donating, her friend said, ‘Oh, you should come with us. We've got this whole group that donates.’ And so now she belongs to this group that all donate plasma, and it's a community that she's now found herself in. It's been a really nice opportunity to connect with other folks,” Sara said.

Lucas’ tumor has been successfully removed however his IVIG treatments continue.  This winter he was invited to the statehouse to join New Hampshire Governor Chris Sununu as he proclaimed January as National Blood Donor Month.

“We're part way through this journey, but I think we still have a long road ahead of us. He slowly regained the ability to walk, could hold his head up, wasn't having the tremors, wasn't having as many of the issues,” said Sara.

The need for blood is constant – and those lifesaving blood products are only available thanks to generous blood donors. If you’d like to roll up a sleeve to help patients in need, visit RedCrossBlood.org to find a blood drive near you.