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In Memory of Safa: Safa’s Smile Myasthenia Gravis Fundraiser Walk

Last weekend while hanging out with some girlfriends at Six Flags we got some awful news. Our friend’s daughter, Safa, was in the hospital in critical condition. She was 6.5 years old. Safa had a condition called Myasthenia Gravis. It attacks the muscles in your body and weakens then. As you can see in Safa’s picture on the left, it started with her eye. Her mom took her to the doctor and the first response was that she was doing it on purpose, making her eye sag. Her mom, ever the advocate, said that is NOT what my daughter is doing and took her to another doctor. She then found out that Safa had Myasthenia Gravis. She did special treatments with her and even gave her a surgery to remove the thymus gland because it’s supposed to help with the condition.

Safa’s mom, still the advocate for Safa and the disease planned a walk to help raise awareness of Myasthenia Gravis. She actually planned two; one in Ohio where they currently live, and one here in Illinois where we all knew them. No one knew what was to come last Saturday, though. You see, the Myasthenia Gravis attacked and weakened Safa’s heart. Unfortunately, at 6.5 her heart gave out. It had stopped for 30 minutes before they got it started again. Unfortunately, it was too late. I feel so badly for Safa’s family. She left behind a 3.5 yr old brother. I know I couldn’t imagine telling David that his big sister had died. I just can not imagine the grief that her family is going through! I have been crying daily since finding out about Safa.

I’m helping the only way I know how. I’m writing this post and walking in the walk. My group is trying to raise $500 in order to help find a cure for this disease. Safa was one of the sweetest little girls I’ve ever met. I can’t believe she’s gone. Look at this letter she wrote:

Here’s a little about Myasthenia Gravis:

Myasthenia Gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek and Latin words meaning “grave muscular weakness.” The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family.

For more info, visit the Myasthenia Gravis site.

Here are some common signs to watch for:

  • A drooping eyelid
  • Blurred or double vision
  • Slurred speech
  • Difficulty chewing and swallowing
  • Weakness in the arms and legs
  • Chronic muscle fatigue
  • Difficulty breathing

Please, please consider donating in memory of Safa. My walk is 9/29. I don’t have long to raise money. I just want to raise as much awareness about this as possible. Please donate to Sweet Safa.

About the author

Paula Paula Krueger considers herself a "baby "chef, not because she cooks for babies, but because she's still learning how to cook. She started this blog after taking Wilton method classes and at that point was more interested in baking. She's since become more interested in learning to cook as her family has grown. She also covers product reviews and travel as well.

Paula About Paula

Paula Krueger considers herself a "baby "chef, not because she cooks for babies, but because she's still learning how to cook. She started this blog after taking Wilton method classes and at that point was more interested in baking. She's since become more interested in learning to cook as her family has grown. She also covers product reviews and travel as well.

Comments

  1. Wow, I am so sorry. Praying for your friends family :( What a tragic loss. She’s so beautiful.
    Rachel´s last blog post ..Sick of Shaving?

  2. I am so sad for your loss, I didn’t know of that disease, that girl was just a baby! ((Hugs)) for you and for her family, but KUDOS to her mom for being her advocate, that is amazing.

  3. i cant imagine the loss. I dont know if I could ever move again. Prayers to this mother to find peace.

    trisha
    trisha´s last blog post ..Playing with Phoenyx

  4. I am so sorry for your friend’s loss. My uncle had myasthenia gravis, and I have worked with several patients who have had it. I have never heard of a child having it. So incredibly sad.
    Katie´s last blog post ..Time to find some fall clothes

  5. My friend’s daughter had this too……my thoughts and prayers to everyone
    Debra´s last blog post ..Strawberry Shortcake: Jammin’ with Cherry Jam (Recipes & Giveaway too)

  6. This is so heartbreaking. Prayers and heartfelt condolences to this family to find strength and peace. What a beautiful little girl.
    Lauren Ivy Chiong´s last blog post ..Help Lauren become Macy’s next mom blogger: Vote for her in round 3 (final round)!

  7. This brings tears to my eyes. I can’t imagine what her poor mama is going through right now.
    Jenn´s last blog post ..10 Years

  8. This makes my heart break. I am sending prayers to your friend’s family.
    Sara Phillips´s last blog post ..Our Experience at #LEGOKidsfest

  9. Oh how sad! Lots of thoughts/prayers for her whole family :(
    brandy´s last blog post ..GradSave Makes Saving For College Easy!

  10. Thank you SO much for writing this. It HURTS me SO bad knowing she’s not closer to me. I’m happy to know SO many people all over are so caring and so compassionate.

  11. Oh I am so sorry. My thoughts and prayers with you and her family!
    Nichol´s last blog post ..LittleMissMatched 20%, 25% or 30% Coupon

  12. Oh my goodness, I am so so sorry. This is beyond heartbreaking. I will spread the word to everyone in my networks.
    Beeb Ashcroft´s last blog post ..Marvel Memories + Walmart Iron Man 3 Sweepstakes! #CBias #MarvelAvengersWMT

  13. I’m so sorry Paula. What a devastating loss for that girl’s family and her community.
    marybeth @ http://www.babysavers.com´s last blog post ..All of Target’s Printable Baby Coupons: Save on Gerber, Avent, Huggies and More!

  14. Its very sad :(((( , I hope from god yerhmaha

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