"I believe a cure is possible and we will eliminate the challenges of MPS. Join us to make this a reality for Keller Blakeley and all children living with MPS"

Keller Blakeley

Keller is a fun loving two year old little boy that loves his football team the Dallas Cowboys! He enjoys any sport that involves a ball, playing with race cars, and spending time with his sisters. It has been a long and arduous journey to get to a diagnosis, but now we can finally direct all our efforts to finding a cure and advocating for MPS.

My goal is to raise $250,000
Total: $12,496

Keller's Story

When Keller was a couple of days old he had a swollen vertebra that was very prominent on his back. We carried him to a specialist who thought it was inflammation from lack of padding on his car seat. As he has grown-up, his spine has started to curve, prompting us to seek further medical advice. We took him back to see the specialist and he was diagnosed with kyphosis (curvature of the spine). The doctor wanted to run genetic tests to see if there were any underlying issues that would cause this skeletal dysplasia. The tests results came back diagnosing Keller with a rare genetic disease called mucopolysaccharidosis, otherwise known as MPS. He specifically has MPS IV(A) which has a wide range of symptoms that vary in severity. Mucopolysaccharides are chains of sugar molecules used to build tendons, bones, cartilage, and other connective tissues in the body. The body constantly replaces used materials and breaks them down for disposal. MPS IV patients are missing an enzyme essential to breaking down the mucopolysaccharide keratan sulfate. These materials remain stored in the body’s cells, causing progressive damage. . Fortunately, there is treatment for MPS IV(A) in the form of enzyme replacement therapy (ERT), but this is by no means a cure. ERT is a 5 hour long weekly IV treatment that only slows down the progression of the disease. Finding more substantial treatment is critical for Keller and MPS patients around the world. All donations made in Keller’s name will go to research for a cure.

In our opinion, spirituality is just as important as medical treatment, therefore keeping faith that God has a plan for Keller is paramount. We need not to look at Keller and his special condition as a negative situation, rather as an opportunity for us to draw closer to God and harness His strength and love to give to Keller. Everyone in this world suffers, so it is not what you suffer, but how you respond to suffering. Positivity is contagious, and we want to spread that message to everyone who touches Keller’s life. It is our job to make Keller feel loved and that this condition does not hold him back. Please keep Keller and all families effected by MPS in your prayers. Please pray for a cure and do not hesitate to pass this prayer requests on to others. Prayer is very powerful, especially in mass numbers.

“For I know the plans I have for you, plans to give you hope and a future.” Jeremiah 29:11

See Keller’s CaringBridge page here

Messages in Keller's Guestbook

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  • Eva

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  • Rosemary Buerger

    Praying for Keller and a cure
  • Jeffery House

    Keller, from the men and women who work with your daddy, we hope this donation will help find a cure for you. Stay strong!
  • Mary Tolson

    This is my precious Grandson Keller. Please pray for him and his precious family.
  • Cathleen Caliguire

    We were made to be courageous as Jesus infuses us with inner strength according to His promises. EVERY DAY He does miracles. We look forward to your day Keller. He does have a good plan. God bless you all Keller and family. Thank you for having the spiritual insight and doing this even when afraid. Lean into Jesus HE WILL NEVER FAIL YOU!!
  • Cindi Dunsworth

    Keller, you got this Buddy... the strong faith your family lives by and all the love and support coming your way, from family and friends, will give you and your precious family the strength to endure this journey. Love and Hugs Aunt Nini and Uncle Mike

  • Alex Ross

    Praying for Keller. Love to all of you -AR

Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

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