- J
- J
- C
Dear Family and Friends,
My 2.5 year old nephew, Sam was diagnosed with Acute Flaccid Myelitis on September 27, 2016. A rare diagnosis with no definitive cause or cure that has dramatically changed the lives of more than 150 children and their families over the past 2 years. He went to sleep a typical toddler and woke the next morning with a completely flaccid left arm, a fever, and neck pain. My brother and sister-in-law immediately rushed him to the local Children's hospital. While undergoing all kinds of tests his symptoms progressed over the next day to significant weakness throughout his entire body and he was unable to walk or sit up without support. Sam is very fortunate in that his symptoms stopped progressing beyond that point as some children have to be put on ventilators and feeding tubes because the muscles used to breath and eat become affected.
Once stable, Sam and my brother travelled to Kennedy Krieger Institute in Baltimore, Maryland where Sam participated in 3 weeks of inpatient acute rehabilitation. Otherwise known to Sam as Super Hero Camp! He made good progress at Camp and he continues to make steady gains at home participating in outpatient therapy. However, the little research that is available shows that participating in a 3-week intensive physical and occupational therapy session using the Thera-Suit and Universal Exercise Unit (a.k.a The Cage) have been extremely beneficial to these children in helping to restore some of their strength, balance, and overall function.
Sam continues to work hard everyday in all of his therapies and in the exercises and activities he does with my brother and sister-in-law on a daily basis. He struggles in getting more left arm movement at the elbow and shoulder, as he has had limited return at this point. And he is slowly building his strength and endurance back. Sam will be participating in an Intensive Therapy "Camp" in March of 2017 for 3 weeks in Atlanta that will boost him to the next level in his recovery. Sam's health insurance only covers a limited number of sessions for outpatient physical and occupational therapy and it does not cover the more specialized intensive therapy program.
With Sam's birthday and the holiday's right around the corner we are asking our family and friends to consider donating to Sam's page in lieu of presents to help fund his Intensive Therapy Camp in the Spring. There have only been 3 children with this diagnosis to make a full recovery and our little super hero is going to be number 4! Thank you for taking the time to read Sam's story and are grateful for your support.
#samstrong #superheroSam #acuteflaccidmyelitis #number4
My 2.5 year old nephew, Sam was diagnosed with Acute Flaccid Myelitis on September 27, 2016. A rare diagnosis with no definitive cause or cure that has dramatically changed the lives of more than 150 children and their families over the past 2 years. He went to sleep a typical toddler and woke the next morning with a completely flaccid left arm, a fever, and neck pain. My brother and sister-in-law immediately rushed him to the local Children's hospital. While undergoing all kinds of tests his symptoms progressed over the next day to significant weakness throughout his entire body and he was unable to walk or sit up without support. Sam is very fortunate in that his symptoms stopped progressing beyond that point as some children have to be put on ventilators and feeding tubes because the muscles used to breath and eat become affected.
Once stable, Sam and my brother travelled to Kennedy Krieger Institute in Baltimore, Maryland where Sam participated in 3 weeks of inpatient acute rehabilitation. Otherwise known to Sam as Super Hero Camp! He made good progress at Camp and he continues to make steady gains at home participating in outpatient therapy. However, the little research that is available shows that participating in a 3-week intensive physical and occupational therapy session using the Thera-Suit and Universal Exercise Unit (a.k.a The Cage) have been extremely beneficial to these children in helping to restore some of their strength, balance, and overall function.
Sam continues to work hard everyday in all of his therapies and in the exercises and activities he does with my brother and sister-in-law on a daily basis. He struggles in getting more left arm movement at the elbow and shoulder, as he has had limited return at this point. And he is slowly building his strength and endurance back. Sam will be participating in an Intensive Therapy "Camp" in March of 2017 for 3 weeks in Atlanta that will boost him to the next level in his recovery. Sam's health insurance only covers a limited number of sessions for outpatient physical and occupational therapy and it does not cover the more specialized intensive therapy program.
With Sam's birthday and the holiday's right around the corner we are asking our family and friends to consider donating to Sam's page in lieu of presents to help fund his Intensive Therapy Camp in the Spring. There have only been 3 children with this diagnosis to make a full recovery and our little super hero is going to be number 4! Thank you for taking the time to read Sam's story and are grateful for your support.
#samstrong #superheroSam #acuteflaccidmyelitis #number4
Organizer and beneficiary
Jami Huguet
Beneficiary