This will be Miles Agnew's last Christmas and last time ever sitting on Santa's lap. This 2-year-old boy was born with a rare condition called microcephaly, which is when a newborn's head is significantly smaller than normal. Children with microcephaly have smaller brains which impact their brain development.
Miles suffers from several other health problems including spastic quad cerebral palsy, intractable epilepsy, brain malformations, cortical vision impairment, and feeding intolerance. He was adopted at three months old by the Agnew family. Miles has been on hospice for months, and his health has been declining.
"His little body went into shock and has started to shut down. We don't know what happened," his mother, Michelle Agnew, told ABC News.
While being in hospice at Primary Children's Hospital in Salt Lake City, Utah, his pain and discomfort are being managed.
On December 5, Miles and his sister, Hailey, 13, and brother, Taveon, 11, visited Santa at the hospital. The visit was coordinated with the Secret Sleigh Project, which is an organization that "brings Santa to the homes of children with acute medical illness, chronic illness and children who cannot leave home."
"With the turn in Miles' health and trying to make more memories as quickly as we can we didn’t think we would be able to do our Santa visit," Michelle said. "We treasure our time and our memories with our family so much. Although we have had so much heartache in our lives we try our hardest to keep moving forward."
ABC News sat down with Jerry Bodily, aka Santa. Jerry said it was an emotional visit — one that hit close to home and brought him to tears.
"Back in the 70s when I met my former wife, she had two daughters, her youngest had been diagnosed with hypoplastic left heart syndrome, and six weeks after we met, she lost her battle, so I knew what the family was going through. I can’t lie, I got choked up, and there was a tear in Santa’s eye, but this was for this family’s memory," Jerry said.
Sarah Portillo, founder of the Secret Sleigh Project, told ABC news that the connection between Jerry and Miles was "no accident."
"It brings more meaning to the Christmas season," she said. "It elevated my hope that perhaps we are all here to orchestrate small miracles, as long as we are open to the opportunity. I am very grateful that we were able to be a part of this family's day, in some small way, and I will never forget it."
To Michelle and the rest of the Agnew family, the day was very special — a day they will never forget.
"We are so fortunate for all the good times we’ve shared together and are so grateful for the friends, family and medical community that have supported us," Michelle said. "Miles is such a special little boy who is very, very loved in our family."
This is a beautiful story. Please share if you agree! Did you know there is a need for more Santas to visit with children? If you know someone who would love to volunteer their time, check out the list of cities in need below.
In other news, check out what Chip and Joanna are up to at St. Jude Children's Hospital.