Jackson (on the left) was diagnosed with a disease called Mucopolysaccharidoses (MPS). It is a genetic lysosomal storage disease (LSD) that impacts 1 in 25,000 births and is caused by the body’s inability to use specific enzymes to break down and recycle materials in cells.
While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the build-up of cell materials. Jackson was diagnosed at the age of three.
There are numerous types
of LSDs and the disease differs from patient to patient and symptoms vary
in severity. In most cases a child
receives a recessive gene from each parent.
For Jackson, he has MPS II, also known as Hunter Syndrome,
and it is so rare that it effects 1 in 100,000 males. This form of the disease
is also severe, progressing and life limiting.
Affected individuals will MPS may experience brain disability, cloudy
corneas, short stature, stiff joins, incontinence, speech and hearing
impairment, chronic runny nose, hernia, heart disease, hyperactivity,
depression, pain and a dramatically shortened life span.
While there is no cure for MPS or related diseases, medical
advancements are making great strides in helping to manage the disease
symptoms. Currently there are enzyme replacements on the market and gene
therapy, among other options. Bone marrow transplantation has also been
considered successful for many; however few MPS patients qualify for this
high-risk procedure.
My heart goes out to Carrie, Jackson and their entire family, and the
many families coping with this life-threatening disease.

Please join Mommy's Point of View, and others, as we help to elevate awareness for this disease and to support Jackson and his family. Donations are always welcome. Every little bit of attention
and funding goes a long way.
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