International MPS Awareness Day May 15

mps courage

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.

mps awareness day

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God Is Bigger

Update: 11/2/12 9:00 pm:

Through the wonderful outreach of Samaritan’s Purse (along with a few tweets, facebook messages, and phone calls), the Begs are sleeping warmly in their own home tonight!! GO God!!!

AND through one of the incredible blog readers of this blog, by tomorrow 30 gallons of gas will be delivered to them, allowing them to keep a warm home, cook on a stove, and have light when needed, hopefully until the electricity is back on.

Update: 11/2/12 Noon:

This is the most recent message from this family that needs urgent prayer in New York:

People standing in cold since 5am. So gas is truly valuable here. I was able to get online late last night but now I can’t. Guess more people using the net at day time. Next street from us, wires are all over laying on the ground and doesn’t seems it will be fix any time soon. It freezing here now. Ran out candles but stores open don’t have any left either. Its a disaster. Stores only taking cash for food items but no cash available at ATM machines. Keeping children warm is really hard.

11/1/12 Special Prayer Request:

Friends, one of the dear families we are associated with through Taylor’s disease,MPS, has been severely affected by the storm. The Begs need prayer for their family desperately. They have three girls with MPS- my Taylor’s disease. Not one, 3! The girls are severely affected by MPS, requiring oxygen, and such. They live in one of the worst areas hit by the storm and have been without power, etc. for several days. Staying warm is critical for families who have children with MPS. Truly this is a terrible situation- I need your help praying for this precious family!!

Lord, I pray for your awesome power to come down for this family today.  You created the storm and you can calm the aftereffects  with a single word.  I pray for the precious Beg girls and their family today. I pray that the girls would be able to maintain body temperature and their oxygen supply would sustain them.  I pray that the oxygen refills would arrive timely.  I pray that the electricity issues would resolve quickly and You would sustain them as only you can.

Will you continue to pray for this dear family with me today?

 

Tremendous Support from What’s In the Bible?

What’s In The Bible? is featuring the Carnival of Courage today on their blog.  How exciting is that!! Here’s a little glimpse of my writing there and thanks for clicking over to their site to read the rest!

What’s in the Bible? Supports Carnival of Courage

I’ll never forget two specific days in the life of my daughter’s journey with her disease.  The first was the day we received Taylor’s diagnosis of MPS.  After seeing over twenty-some doctors and relentlessly searching for an answer to her difficulties since birth, at four years of age, the test results were positive for the rare metabolic disorder of MPS, mucopolysaccharidosis.

The second day I’ll never forget was six months later when the doctor’s office called and told us they just diagnosed another patient and would our family like to meet theirs?  Would we ever!  The ins and outs of dealing with rare disorders, such as MPS, is tough.   Eleven years ago, it was even tougher.  Social media hardly existed. Facebook and Twitter weren’t options of connection like they are today.  We felt…

PS: You can download the coloring page for their latest DVD right here!! I can’t wait to get mine.

PSS: I decided to give away a What’s In The Bible? DVD and CD on the blog today! Woohoo! So here’s the rafflecopter, just follow instructions! :)

a Rafflecopter giveaway