Day 21: Livy

I want you to meet someone remarkable today. Her name is Livy. At 22 months Livy was diagnosed with Gorlin Syndrome; this is a genetic syndrome that causes the body to create cancerous and noncancerous tumors to grow.

Livy

In August of 2015, Livy was diagnosed with brain tumors or medulloblastomas. She can not tolerate radiation treatments, so the only avenue that her family has to help her is with chemotherapy treatments. Livy’s syndrome and cancer make her treatment a very rare case.

Two members of the Gilroy, Morgan Hill Community nominated Livy. Her father attended Live Oak High School with one and the other was a family friend. They wanted to do something to reach out, to let this family know that many people were praying for them as they travelled this unthinkable journey.

The Go Fund Me Page sums up their journey best,

“There is no real ‘cure’ for many pediatric brain tumors, many of the choices facing the parents of children inflicted with the form of pediatric brain cancer Livy is facing are ‘the devils choices’ as one of her doctors put it. A few of the largest hurdles you must overcome when you are put face to face with this disease are the lack of awareness, lack of funding for research and cures, and the general support needed to make the decisions that will impact a young life forever.”

If you want to donate this is the link for her Go Fund Me page: https://www.gofundme.com/livysjourney

Our elves were able to make sure that Livy had a handmade scarf and hat to keep her warm on her trips and stay in UCSF. They also helped get her a frozen dress, shoes and a Frozen Castle. We were told she liked that Disney movie.

We are praying for Livy and her family every day.

Until there is a cure…

Michelle and the Holiday Cheer Elves

Day 17: Meet Vanessa

Day 17: Meet Vanessa

“Do your little bit of good where you are; it’s those little bits of good put together that overwhelm the world” – Desmond Tutu

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Okay so today I am going to get up on my soapbox a little bit for this one. Pediatric cancer is a cause that is near and dear to my family. I know too many lives that have been forever altered by this disease. Did you know that 3 new medicines have been created for pediatric cancer in the last 20 years and that 23 new medicines were created for adults in 2012 alone? And as you saw from the stats above there is little funding that goes toward pediatric cancer from the government or other existing cancer organizations. Unravel, which I have spoken about before is an organization that specifically raises money for pediatric cancer. We need to start paying attention to these stats and to the faces of pediatric cancer and start saving their lives.

Today’s recipient is fighting cancer and if you noticed we had an earlier recipient that is fighting pediatric cancer and we have another one I haven’t yet written to you about. Bottom line there are too many children that are fighting this disease to have only 3 types of medicine to fight it and very little funding to back new research.

And now as I step down from my soap box that brings me to Vanessa. Readers meet Vanessa.

vanessa

Vanessa  recently had her leg amputated as part of her battle with this disease. Shaleen nominated Vanessa and had this to say about her, “I have seen some of her journey on FB and it is truly amazing to see her bright smile in every single picture whether she is out and about in her wheel chair or in the hospital bed. Her huge family has been right by her side through this all. To see the love they have for Vanessa and the strength they all have is amazing!”

 

When Shaleen told Vanessa’s aunt that she had been nominated and was chosen to receive a gift she was so touched.  She wrote in to say, “[T]hank you so much. It’s definitely been tough, but she’s still here with us and despite what she’s gone and going through she’s in good spirits. She’s a tough cookie !” She also let us know that she really wanted an American Girl doll. What happened next brought Shaleen and I to tears.

I posted on my FB group page that we needed an American Girl doll for a recipient that was battling cancer. I had two donations within 10 minutes. The sense of joy and gratefulness that encapsulated my heart was indescribable. You have already seen that Elayna received one of the dolls (click here to read about it in case you haven’t read that post yet) and Vanessa was given a doll as well. Then what was even more special is my friend Rebecca heard about who the recipients were and she told her mom who then made scarves and hats for all the girls and tons of doll clothes! You elves are one amazing bunch that is for sure!

 

It gets better…Katie who donated the doll, movie, and one of the outfits took her girls with her so they could share in the Holiday Cheer and learn about doing something good for others. Check it out…

Then this transpired on Facebook after the delivery of the gift and I just had to share because this is what holiday cheer is all about!

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Speechless yet…yeah I was, too.

I know I speak for all of us when I say we are sending prayers and thoughts of supreme strength to Vanessa and her family. She is a brave soul who is definitely one tough cookie. We hope that the gift brought her some joy and let her know that there are so many people rooting for her, so many people whose lives she has touched.

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Until there is a cure,

Shaleen, Katie, Rebecca, Michelle and the holiday cheer elves

P.S. to learn more about Unravel click here.

 

Holiday Cheer Day 3:Best Friends to Infinity and Beyond

Holiday Cheer Day 3:Best Friends to Infinity and Beyond

IMG_3250Do you remember the day you met your best friend? Which friend of yours has been through your life the whole way through? Now could you imagine that after only knowing them for a few short years you would have to go through losing them. Now take even another moment to think about what it would be like to bear that loss at 6 years old.

Our recipient for day 3 doesn’t have to think about that she lives it. Jaeda lost her BFF when she was 6 years old. For the last two years she has had to learn what life is like here while her BFF is in heaven.

Her mom. Amy, has shared her thoughts via FB and I thought I would share them here as well:

Jaeda“We love and miss her so much. Lately Jaeda has been noticing that the songs they used to dance to are now old songs. She wonders if they’d still be having dance parties to the new songs. Jaeda will forever miss this friendship, a young friendship that taught them how to be a friend.”

 

jlk & Jaeda“One of my favorite pictures of these sweet girls! …These girls had so many first things together. First sleep over, first concerts (gilroy gardens concerts were so fun with these dancers), first time riding in cars together, sharing clothes, sharing exciting news (Jaeda told Jennifer on the phone when she found out about Ava ), swimming together, learning how to bribe moms for dinner dates and the talent of a princess show! This year without her friendship, her spunk and sparkle has been so very hard. I’m thankful for all the time we shared with this amazing princess…but so very angry that she is forever 6.”

jaeda unravelJaeda is one of the most mature and well mannered young ladies I have ever met. Whether she is Fluttering or manning a bake sale, she is incredibly involved with raising awareness and funds for Unravel, an organization that raising money for pediatric cancer research and treatment. She is committed to putting an end to the disease that robbed her of her best friend. Beyond her passion to put an end to pediatric cancer, Jaeda has been recognized both at church and school for her character.

IMG_3252Delivering Jaeda’s gift was such a wonderful experience. She was so excited. The homemade pillowcases she loved because she loves pillowcases and has one from a recent sleepover where all her friends signed it, which she excitedly showed me.

She was excited about the Descendants DVD, but flipped out when she saw the Justice and Claire’s gift cards. She couldn’t believe we guessed her favorite stores.

jlk & jaeda 2At 8, Jaeda is poised, polite, and carries a compassion that is greater than people four times her age. Thank you all for making this sweet girl’s day a little brighter and helping to let her know we are all supporting her.

Peace and love,

Michelle and the Holiday Cheer Elves