• 5:45 ~ Time Ella gets up in the morning, in order to do treatments, eat breakfast and make it to school by 8:25
• 2 ~ Hours of breathing treatments each day – inhalers, nebulizers and her vest (when she’s sick, it increases to 3 hours)
• 3 ~ Times Ella must shoot salt water into her sinuses every day to prevent nasal polyps from developing
• 6 ~ Meals and snacks Ella must eat each day in order to consume at least 2500 calories
• 7 ~ Quarts of Half-and-Half Ella drinks each week
• 31 ~ Pills Ella swallows every single day
• 217 ~ Pills she swallows every week
• 868 ~ Pills she swallows every month
• 10,416 ~ Pills she swallowed this past year
• Over 80,000 ~ Pills Ella has swallowed, so far, in her short seven years of life

Ella has been amazingly healthy this past year (knock on wood), but we know it’s because we spend an enormous amount of time doing treatments, taking medications, and boosting her immune system any way possible. We still fear the possibility of more nasal surgeries to remove stubborn nasal polyps that keep developing because thick gunky mucus is clogging her sinuses. It has now been almost a year and a half since her last surgery and Ella is still polyp free, (again, knock on wood). But that is mostly due to the three times a day she shoots salt water up her nose... but the regrowth of these polyps is a constant concern for us always.

Recently there’s been a lot of talk about the wonderful advancements being made and amazing new drugs shimmering on the horizon, but until real medications are in the hands of those with CF, people…. kids…. are still dying. And that is so not okay. When you have Cystic Fibrosis there are no treatment breaks….. there is no hope for remission…. vacations from the disease are impossible…. there is NO CURE….. It’s fighting, day in and day out….. day after day. It’s exhausting. For Ella and for our whole family. We need more answers, we need better options, and, to get either of those, we need your help.

Asking people for help is not something that ever gets any easier. I know you might think it’s no problem for us. We seem to have no problem hounding you every year for help, right? But, the truth is, it never gets easier. Not the asking. Not the hoping you’ll help. Not the feeling of apprehension as we wait to see who might decide to help us this year and who will simply disregard our need. Each spring we ride this rollercoaster of hope, fear, disappointment, and gratefulness. Our stomachs still drop, our hearts skip a few beats, we get a few more gray hairs, and our eyes always end up a little teary.

So, here we go again……

On May 19TH, we will again be leading a team of “Ella’s Elite” at the Portland, Oregon Great Strides Walk in an effort to raise the necessary funds to sponsor vital research that will save lives. It will be a day of fun, exercise, good food, and great company as we celebrate our fundraising efforts at Oaks Amusement Park. We would like you to join us in support of this very important cause.

This year we have a fundraising goal of $5,000, and we would be honored if you would sponsor us with a contribution of your choice. Any amount will help, whether it is $150.00, $50.00 or $10.00.

You can donate by simply clicking on the "Make a Donation" button on this page.

Or....you can always join our team... just ask us for the details and we'll help you get started.

Any contribution you make is 100% tax deductible and the oh-so-efficient CF Foundation will use over 90 cents of every dollar raised to find and fund A CURE. You can donate online, or you can send a check (made payable to the “Cystic Fibrosis Foundation”) to us by Monday, May 14th. Please do not hesitate to contact us if you have any questions or need more information (jonandlindsay@comcast.net).

Please know, it doesn’t matter if you’re able to give us $200 or $20. The power of the Great Strides Walk is everyone coming together in an amazing show of grassroots fundraising. Since the Cystic Fibrosis Foundation gets no direct Federal funding it is imperative that we get support from private individuals like you. YOU are making a difference. YOU are giving Ella more of a future. YOU will be able to say you helped fund A CURE.

As we enter our eighth season of fundraising, we are a little war-weary and a bit battle-scarred, but we are no less committed to this fight. If anything, we are more dedicated than ever, as every year, things get a little more tough for Ella… the stakes get a little higher…. the risks get greater…. the treatment regimen grows…. but, at the same time, the real possibility for tangible answers gets brighter every day. The only thing holding the science back is proper funding, and that is something YOU can help us fix. We will never give up in our relentless pursuit of A CURE for Cystic Fibrosis… for Ella and the 70,000 others across the globe who are struggling every day. We hope you'll join us…. that we can count on you….and together we will make “CF” stand for “CURED FOREVER”!!!!!!!

Until There’s A Cure,

The Deveaux Family

P.S. Please forward this message on to anyone and everyone you can think of... your family, friends, neighbors, co-workers, etc. by clicking on the "Send This Page to Others" button below. If you click on the button and it doesn't work, please simply forward this home page address (http:/www.cff.org/great_strides/elladeveaux) in an email message of your own. We need everyone's help in this important fight. Thank you so much!