Saturday, February 9, 2013

Hope for Ella

Ella is the 6 year old daughter of my niece. She has always been one of those kids that just makes you smile and giggle even before she could speak! She grew and her personality grew bigger and funnier and with her. Ella has a presence that commands attention in any situation.


 Her compassion for other children has always been remarkable, shown almost 2 years ago when Ella wanted to get her hair cut so she could donate to Locks of Love when she was barely 5! Terri and Chris received the devastating news, within weeks of the hair donation, that Ella's reduced vision was not due to typical nearsightedness; rather she was losing her vision due to tumors growing on her optic nerves (gliomas) because she had neurofibromatosis.

Neurofibromatosis. Something none of us had heard of, yet just the sound of the name was frightening. Terri relayed the potential effects this genetic disorder could wreak on our Ella-Bella. The doctors said they would watch, and wait. Neurofibromatosis, NF1 specifically, never goes away-there is no cure. NO CURE. There is no treatment for NF. The medical experts can only treat the symptoms.

This is not an uncommon disorder: 1 in 3000 people are afflicted with Neurofibromatosis, more than are affected by Tay-Sachs, Cystic Fibrosis, Muscular Dystrophy, and Huntington's Disease combined, yet hardly anyone has heard of it! NF can lay dormant for a person's lifetime or it can present one or all symptoms in or on a body. NF1 can cause tumors ANYWHERE inside the body, including major organs and bones. Tumors can grow ANYWHERE outside the body causing disfiguring physical disabilities. Learning disabilities are a direct result of neurofibromatosis, and NF can result in blindness, deafness, paralysis, scoliosis, loss of limbs, malignancies, and death.

We prayed  along with Chris and Terri that Ella's symptoms would hold steady and nothing new would present nor would treatment (chemotherapy and/or brain surgery) be necessary. Her MRI's initially showed no significant growth, although Ella's vision deteriorated to label her as legally blind.

During this time Ella began kindergarten. She had difficulties with the schoolwork and attention, an evaluation was recommended and Ella was diagnosed with ADHD with learning disabilities. Spring of 2012 MRI showed new growth, but the decision was made to wait and watch 6 more months. Summer arrived and brought my oldest daughter Alexis' wedding to her love Shown, a beautiful day at the ballpark! The bridal party was called out to sing "Take Me Out to the Ballgame" and Ella, who always says she wants to be a STAR, got hold of that microphone, belted that song out to the entire stadium and not only grabbed that spotlight but sparkled in it so brightly her light was contagious!

Her next MRI was scheduled for later in the fall. Ella was beginning to talk about general pains and tingling on one side of her body. We received the heartbreaking news that the tumors were growing much too fast. Initially the local doctors suggested watching a bit more although they were almost certain chemotherapy would be needed. An appointment was scheduled 4 weeks later to review but Terri wanted a second opinion. Rapid growth could quickly and easily result in Ella losing her eyesight completely as well as potential paralysis and hearing loss. Mommy and daughter took a trip to Washington, D.C. where they toured the sights, shopped, went to the American Girl store--and consulted with one of the top NF specialists in the country. It was decided if the local hospital still held the decision to delay chemo after the follow-up visit, Ella would receive her chemo treatments in D.C. Surgery was ruled out because the risks (due to the location of the tumors) outweighed the benefits, and chemotherapy has been shown to be fairly effective on Ella's type of brain tumors.

Team Sign

At the Walk
In the short time between the fall MRI results and the start of chemo, Ella and her family participated in a walkathon to raise awareness for brain tumors. They named their "team" HopeforElla.

As the first chemo treatment date approached in December, my oldest son started tweeting #HopeforElla to try and get people to cheer her on. My oldest daughter picked up on it and initially got the attention of a contestant on "The Voice" TV show who re-tweeted and helped grow the Twitter campaign. I got involved and helped establish the HopeforElla Facebook page. Words can not describe how we love this family and adore Ella; we all wanted to help yet felt helpless. T-shirts were made and can be purchased, and today is the first every fundraiser to donate towards awareness and research of NF1.

Helping the Homeless Bag

This child inspires people! As Terri and Ella were driving home from the first appointment, Ella asked about the people she saw on the streets in the city. Terri delicately explained, on a 6 year old level, about homelessness and poverty. Ella's first and only response was "We have to help!" With adult skepticism, Terri was faced with the dilemma of how to help; she decided they would make sandwiches and/or deliver snacks, hats, gloves, blankets, etc. Every single week upon Ella's insistence, mother and daughter deliver some type of assistance to the people on the streets. Ella also told her Mommy that she wanted to help all the kids with things like she has (NF) and she thought she should sell her drawings to make money to help the doctors--and Hope for Ella was born! At six years old she sees this diagnosis as an opportunity to help change the world! How many adults do you know that would wake up on a chemo morning declaring "This is going to be an EPIC treatment day!"

Hope for Ella has grown quickly and continues to grow and evolve. We ask that everyone that visits the page hits the "like" button. People have liked and shared and there are now 1240 supporters on the page! Ella's wish to be a star is coming true. The hopes and supportive comments left on the page help power her through her chemo treatment days, deemed "Terrific Treatment Thursdays"(TTT) by Terri. Individuals and companies have sent Ella craft supplies and books for her to create and imagine during chemotherapy.  Here is a video of Ella opening a TTT package from a local pizza place. You don't have to have a FB to watch!

New for Terrific Treatment Thursdays is to wear pink in support of Ella. People have uploaded creative pink power pictures to Facebook and Twitter For those without Facebook, Hope for Ella now has an email address to which you can send Ella notes of encouragement and Pink Pictures: send to , where you can also request information as to how you can help spread the word of Neurofibromatosis and Ella. A non-Facebook web page is being developed and a paypal account has been established for donations and purchases (like the t-shirts!), again, contact or on Facebook or Twitter for more information. The most important thing is raising awareness of neurofibromatosis and that can only be done by us, and YOU.

Hope for Ella t-shirts
Youngest son's "flyer" for Ella

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