Little Lily's Life: April 2012

To Lily's friends and family,

Another year has passed and the spring is upon us (though it barely seems that the Bay Area experienced a winter). Once again, we will be participating in the Cystic Fibrosis Foundation’s “Great Stride’s” walk. This year will be our fourth year attending and fundraising for this worthy cause, one that all of you may know is so very close to our hearts with Lily. We want to thank all of those who joined with us, walked with us, and made contributions to the Cystic Fibrosis Foundation last year – it has meant so much to us and we continue to be thankful for all of our wonderful support and friendships.

For those who may be new to this(and for those who may want a refresher on CF) please read on…

As you know, Lily was diagnosedwith Cystic Fibrosis (CF) a month after her birth. We had a rough and scary start, but have since learned a considerable amount about the disease and about how Lily is expected to respond given her particular genotype. As it turns out, Lily’s genotype is extremely rare and typically expresses itself with milder than average symptoms. So far, this has proven true and Lily is doing wonderfully.

Lily is receiving world-class carein the Pediatric Pulmonology department at Kaiser, Oakland (one of the country’s best CF-centers).Every three months, she meets with Doctor Shay, nurse Cindy and the department’s team of dieticians, social workers, and respiratory therapists.She is truly thriving and we are lucky that her pancreas continues to functionfully (she is still “pancreatic sufficient”). Lily is now a hearty 34 pounds and her lungs are still super clear. She is overall a super happy (not to mention silly, smart, crazy-haired, sassy, and sweet) kiddo.

We continue to do physical and breathing therapies with Lily every morning and evening. For those interested, this first begins with breathing treatments using a nebulizer machine. The machine turns the drugs, Albuteroland Pulmozyme (manufactured by a “local” company, Genentech, with offices herein the Bay Area) into a fine mist that helps thin any mucus that might accumulate in her lungs. Following this treatment, we “percuss” Lily’s main chestal lobes- this now involves using a vibrating vest to shake the mucusloose from her lungs (promoting “postural drainage”). It is when mucus accumulates and clings on to the walls of the lungs that infections start and problems arise. The vest took a while for Lily to get used to, but it is now a comfortable part of her daily routine, along with having a blast at Dandelion Nursery school (Lara’s alma mater), singing, practicing her letters, jumping on her big girl bed, drawing, being read to, dancing, building rocket ships withher grand parents, and rock climbing with Brian! At this point, because Lily is so strong and healthy, her treatments are still all preventative measures, and we are eternally grateful.

Unfortunately, the majority of kids affected with the disease are not as lucky as Lily. Most have already needed to be hospitalized for lung infections and some kids that are her age have already had lung transplants or are painfully waiting for donors. Others are not able to gain weight and have to take enzymes prior to any meal in order to retain the nutrients. An alarming number of patients don’t have sufficient health care coverage to help them obtain all of the drugs and equipment necessary to sustain their day to day activities. These are the people we need reach out to.

Doctors, nurses and researchers have made incredible strides in learning about Cystic Fibrosis. This year has been especially exciting. Just two months ago, the FDA approved a groundbreaking new drug, Kalydeco. Though this particular drug is only suitable for patients with a specific genotype, it actually targets the genetic mutation(correcting the underlying cause) whereas existing drug therapies up until this point have simply eased the symptoms. If the actual mechanisms can be corrected for one mutation, it is only a matter of time before we are able to correct more common mutations.

The Cystic Fibrosis Foundation (www.cff.org) puts together annual “Great Strides” 10k walks and fundraising drives to show support for those with the disease and to work to find a cure. Because Cystic Fibrosis is such a rare disease (less than 30,000 peoplein the country are diagnosed with it), it is considered to be an “orphandisease.” This means that it receives no funding from the government. TheCystic Fibrosis Foundation is the sole source of funding for research, support and contributions to care centers, such as Kaiser.

It would mean a lot to us if youwere able to join us this year. It is a truly inspiring event. There are organized walks around the country. We have put together a local team (“TeamLily”) that will be marching on May 5^th , starting at Crissy Field,in San Francisco. Following this letter are directions for how to join a walk and how to donate to the organization. Ifyou do not live in the Bay Area, there are directions on how to join a walk in your region.

Thank you all for your incrediblefriendship and support.

With love, Lara, Brian and Lily

How to Join “Team Lily” andGreat Strides in San Francisco on May 5^th :

1. Goto www.cff.org
2. Clickon “Great Strides”
3. Clickon “Register Now”
4. Enter in CALIFORNIA and then “Find a Walk” (ignorethe “chapter” section)
5. Scroll down until you see “San Francisco, CrissyField, “ click on “Register”
6. Click on “I am an individual signing upas a member of a team.” Under “SelectTeam,” search for TEAM LILY (LARA COLLINS)
7. Create your profile. You will need tomake a login and a password.
8. Under “Step 4- Complete Your Register,”you can set a fundraising goal (should you decide to fundraise). Important: the default amount is $150 butif you scroll down (under the $150 amount) you can click on the blank amountand then type in any other amount, for a one-time donation.
9. Sign the waiver.
10. If you are interested in making a donationunder your registration, log in to your account at www.cff.org.Where it says “Your Information,” click on “Make a Donation” and you can enteryour credit card information there.

How to Join a Great Strides Walkoutside of San Francisco
1. Goto www.cff.org
2. Clickon “Great Strides”
3. Clickon “Register to Walk Now”
4. Enter in your state and then “Find aWalk” (ignore the “chapter” section)
5. Click on “I am an individual walker whois not a member of a team.”
6. Create your profile. You will need tomake a login and a password.
7. If you are interested in donating tothe foundation, you can set a “fundraising goal.” Otherwise, you can leave thatsection blank.

If you are not able to joinGreat Strides, but are interested in making a donation to the Cystic FibrosisFoundation under Lily’s name:
1. Go to www.cff.org
2. Clickon “Great Strides” on the left of the screen
3. Clickon “Make a Donation”
4. Under “Donate to a Walker,” and type in Lily’s name (Lily Collins, California) and click on “Find a Walker.”
5. Scroll down to search results and click on “Lily Collins” of “Team Lily”
6. On Lily’s page, click “Click toDonate.”

If you’d like to make adonation, without using the internet:
1. Write a check to the Cystic Fibrosis Foundation
2. Under the memo section, you can write “For Team Lily-SF Chapter”
3. Send check to the Collins’ (872 Erie Street, Oakland,CA. 94610) and we will turn the check in to the foundation.