One Year

Source:  One Year    Tag:  hunters syndrome
Yesterday I met a new friend at the park.  We immediately felt a connection as she met Samantha and told me about her son, Brigham.  I was touched by her love, immediate friendship, and purity of spirit.  She was kind, gentle, and wise.  Wisdom comes through experience, and she has experienced so much.  I loved her instantly and hope to be able to stay in touch.

At age 3, Brigham was diagnosed with Hunter Syndrome.  Quoting from an article about him in the Deseret News:

Six-year-old Brigham Reneer is very much like the Tarzan character he idolizes.  He's tough, brave and he lives in a place fraught with peril — except Brigham Reneer's jungle is a maze of medical tests and painful procedures.  His friends are the make-believe wild animals hidden in the foliage. And his foes are leukemia and a rare disease that will kill him in a few years.  The strong little boy, wearing the leopard-skin robe, has Hunter syndrome, a severe form of a mucopolysaccharide disorder.  That means he's missing the enzyme that usually provides for the regeneration of connective tissues. Instead of regenerating, the mucopolysaccharides in his body remain stored in his cells, forcing his limbs to stiffen, facial features to broaden, brain to lose function and, eventually, his heart valves to shut.

This morning I spent some time reading about her son and stumbled across a video that some friends put together after one full year had gone by since Brigham passed away.  I've never liked the word "death" because it feels so final, and I don't believe that death, as painful as it is, is final.  Reading about him and watching the video helped me feel that again...that life goes on for those who are no longer with us....it reconfirmed my belief.  The video was gentle, tender, and too real for me to keep the tears from pouring over.  But what I felt was true, deep, compassionate love ~ something we could all use a little more of.






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