International MPS Awareness Day is a special day close to the heart of the Wojo tribe. There are some days in life you never forget and one of them for me was the first night I read the word mucopolysaccharidoses (MPS). A pit formed in my stomach and tears flowed down my face as I recognized and matched all Taylor’s symptoms together in one explanation after searching for several years and visiting over 25 doctors.
MPS is a genetic lysosomal storage disease caused by the body’s inability to produce specific enzymes. In normal functioning, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS, like my Taylor girl, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body.
Currently there are treatments available for various types of MPS, but as of yet, there is no cure. For Taylor’s particular subtype, there is currently no cure or treatment.
In plain language, Taylor’s nerve connections have slowly been destroyed over time. For the first three years of her life, she functioned well, only slightly delayed. But while she was once a bubbly happy singing talkative child, now she requires assistance for all of her basic daily needs. She can walk with guidance. There is much to be thankful for.
God has graciously blessed me with Taylor. Her life shines as someone who never gives up, but keeps going on, day after day. She has taught me so much about joy and persistence.
Early diagnosis is key for many types of MPS, as certain types can be treated, and the earlier the better.
For more detailed information, please visit the National MPS Society.
And today, would you mind sharing this? Another child’s functioning could be preserved for many years simply through your click, tweet, pin or share.