Hunter B. - Quilt Finished in 2007

Born: March 25, 1998

Illness: Sanfilippo Syndrome

Hunter B.'s Story (Sister to Ciara B.)

Written by Hunter's mom Alicia in 2007

Hunter has Sanfilippo Syndrome which is also called MPS-IIIA. Sanfilippo children are missing an enzyme which helpd break down the sugars in their body so the sugars collect and cause progressive damage to their brain, heart, liver, joints, etc. and Sanfilippo children usually don't live past the age of 10-13 years old. Hunter is 9 years old and he was diagnosed at the age of 3. His older sister was also diagnosed with Sanfilippo a year before so we decided to have Hunter and his little brother Tommy tested as well.  We thought that Hunter had it because he wasn't talking and kind of followed what Ciara had gone thru but nobody thought that Tommy had Sanfillipo so we were all stunned when we got the results back and both boys also had it.  When Hunter was one year old he had to get a feeding tube because he was aspirating and he had about 10 pneumonias in his first year.  He was still able to eat solid food by mouth but no liquids.  Of course that made him so mad, no more bottle, but that is when he got hooked on the pacifier which has been attached to him ever since.  They said that Hunter would have this feeding tube for the rest of his life but we worked hard at strengthening his throat muscles and he only had to have it for a year.  From the age of 2-9 he didn't really have any health problems but over the summer he was having trouble swollowing so we had to get him another feeding tube.  He is still eating by mouth but we have to watch him so he doesn't choke and he gets tube feeds to help keep his weight up.

Hunter was a wild little red headed boy who earned the nick names "Red Thunder" and "Hurricane Hunter." His world revolved around chocolate and french fries.  In fact for his Make-A-Wish trip we went to Hershey, PA and he had a great time.  Hunter's sister and brother also have Sanfilippo, Ciara is 11 and Tommy passed away four years ago when he was 4.  Hunter and Tommy were best friends and did everything together and I know that when Tommy became and Angel, a little piece of Hunter did too, even though he didn't know what was happening.  Hunter is now in a wheelchair but he can still walk a little bit if we hold onto him but he can't stand by himself anymore.  He is my little mommy's boy and I love him with all my heart.