Holden's Journey
On September 29, 2004, Holden James was born on his Great-Grandmother
Janie's 75th birthday. Holden was greatly anticipated by his big sister Addisyn
Frances as well as his mom and dad. He was a durable 10 lbs. 5 oz and 22
inches long (at 38 weeks gestation.) He arrived as an emergency c-section,
after several hours of a failed induction of labor. He was absolutely perfect.
Tons of blond hair, beautiful pink skin, his cleft in his chin, ten fingers, ten toes.
Our first son was all we imagined. We began our lives as a family of four.
Holden was a sweet, happy baby. Always smiling, laughing and watching his
big sis play, even in tremendous ear pain. Holden had his first double ear
infection at three months. Holden and he had his first set of tubes at 9 months
of age. He also had his adenoids removed. His ear infections disappeared
and we had less trips to the doctor. At 11 months Holden started attending
daycare with big sister Addisyn. He was never healthy. Upper respiratory
infections, colds, strep throat, runny noses and even pneumonia. In May 2006
Holden had his second set of tubes, adenoid growth removed and a
frenectomy. Two weeks later he became a big brother to Gabriel Patrick. In
June 2006 Holden fell and hit his head, he was rushed to the ER and we were
told no damage was detected. His eyes began crossing shortly after. He had
a CT scan and it showed no damage from the fall and we were referred to a
pediatric ophthalmologist. We also had concerns about Holden's back. He
has a lump on his spine and an xray showed no mass or injury. We were
referred to an orthopedic doctor at Childrens Mercy. He had also failed his
hearing test following his surgery in May.
On October 10th, Holden had an ortho appointment with Dr. Nigel Price. After
an intense evaluation Dr. Price told us he thought Holden might have a
condition called Mucopolysaccharidosis. Essentially Holden was lacking an
enzyme that breaks down cells and they begin to store in organs, skin and
tissue. On Oct. 13th it was confirmed through urinalysis that Holden did have
MPS. On Oct. 16th we met with genetics and had a blood test. They
determined Holden's liver and spleen were enlarged. Oct. 20th we were told
Holden has MPS VI, Maroteaux-Lamy. The rarest form of MPS, only 1100
cases world wide. And the only type that does not affected the brain, the silver
lining in Holden's diagnosis. There is no cure for MPS only treatments. A
bone marrow transplant or Enzyme Replacement Therapy. On Dec. 1st
Holden underwent a tonsillectomy, bronchoscopy, muscle eye surgery and a
port-a-cath was placed. Holden received his first Enzyme Replacement
Therapy of Naglayzme on Dec. 20, 2006. He will continue to have ERT, every
week for the rest of his life or until a cure is found.
Our goal with Holden's website and fundraiser is to spread awareness. We
intend on getting children diagnosised earlier. Creating a support network for
families affected by MPS. Raising money for research. Educating people
about MPS and all the different types. We feel blessed that Holden is the
rarest of rare and it is our purpose in life to help others.
Below are some additional resources:
www.mpssociety.org
www.theisaacfoundation.com
www.treypurcell.com
www.mpsvi.net
www.mpsvi.com
www.jointhesearch.org
Janie's 75th birthday. Holden was greatly anticipated by his big sister Addisyn
Frances as well as his mom and dad. He was a durable 10 lbs. 5 oz and 22
inches long (at 38 weeks gestation.) He arrived as an emergency c-section,
after several hours of a failed induction of labor. He was absolutely perfect.
Tons of blond hair, beautiful pink skin, his cleft in his chin, ten fingers, ten toes.
Our first son was all we imagined. We began our lives as a family of four.
Holden was a sweet, happy baby. Always smiling, laughing and watching his
big sis play, even in tremendous ear pain. Holden had his first double ear
infection at three months. Holden and he had his first set of tubes at 9 months
of age. He also had his adenoids removed. His ear infections disappeared
and we had less trips to the doctor. At 11 months Holden started attending
daycare with big sister Addisyn. He was never healthy. Upper respiratory
infections, colds, strep throat, runny noses and even pneumonia. In May 2006
Holden had his second set of tubes, adenoid growth removed and a
frenectomy. Two weeks later he became a big brother to Gabriel Patrick. In
June 2006 Holden fell and hit his head, he was rushed to the ER and we were
told no damage was detected. His eyes began crossing shortly after. He had
a CT scan and it showed no damage from the fall and we were referred to a
pediatric ophthalmologist. We also had concerns about Holden's back. He
has a lump on his spine and an xray showed no mass or injury. We were
referred to an orthopedic doctor at Childrens Mercy. He had also failed his
hearing test following his surgery in May.
On October 10th, Holden had an ortho appointment with Dr. Nigel Price. After
an intense evaluation Dr. Price told us he thought Holden might have a
condition called Mucopolysaccharidosis. Essentially Holden was lacking an
enzyme that breaks down cells and they begin to store in organs, skin and
tissue. On Oct. 13th it was confirmed through urinalysis that Holden did have
MPS. On Oct. 16th we met with genetics and had a blood test. They
determined Holden's liver and spleen were enlarged. Oct. 20th we were told
Holden has MPS VI, Maroteaux-Lamy. The rarest form of MPS, only 1100
cases world wide. And the only type that does not affected the brain, the silver
lining in Holden's diagnosis. There is no cure for MPS only treatments. A
bone marrow transplant or Enzyme Replacement Therapy. On Dec. 1st
Holden underwent a tonsillectomy, bronchoscopy, muscle eye surgery and a
port-a-cath was placed. Holden received his first Enzyme Replacement
Therapy of Naglayzme on Dec. 20, 2006. He will continue to have ERT, every
week for the rest of his life or until a cure is found.
Our goal with Holden's website and fundraiser is to spread awareness. We
intend on getting children diagnosised earlier. Creating a support network for
families affected by MPS. Raising money for research. Educating people
about MPS and all the different types. We feel blessed that Holden is the
rarest of rare and it is our purpose in life to help others.
Below are some additional resources:
www.mpssociety.org
www.theisaacfoundation.com
www.treypurcell.com
www.mpsvi.net
www.mpsvi.com
www.jointhesearch.org
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Great Grandma Janie & Holden
Big Sister Addisyn & Holden
Big Brother Holden, Big Sis
Addisyn & baby brother Gabriel
Addisyn & baby brother Gabriel
Big brother Holden with baby brother Gabriel 6/2006