Samantha DeLano

My sister’s name is Samantha DeLano, formerly Samantha Penuelas.

In 1991 she was born with a disease called Cystic Fibrosis. Of no fault of her own, her life would never be like mine, or most Americans. This disease has no cure and will eventually take the life of everyone who has it – way before their life would naturally come to close. In ages past, and as recently as the 1980’s people afflicted with Cystic Fibrosis (CF henceforth) would lose their battle with the disease usually before they became an adult. With the advent of recent treatments and developments, CF patients have begun to live longer lives, but are still haunted with the specter that CF casts over them.

Among the numerous issues that CF causes, none of which allow for a normal development, the most devastating and deadly effect CF has on the body is the slow, ultimately fatal, destruction of the lungs. CF patients can begin experiencing lung function loss at any age. This is the grim reality that all CF patients face in their fight to stay alive. Samantha spent most of her life in and out of hospitals for medical treatments ranging from two-week to month-long rehabilitations to restore her vitals and keep her lungs functioning as best as they could. Each time these infections chipped away at her lungs over and over until eventually, CF did what is does best and forced Samantha to make a tough decision. Samantha was fortunate enough to hold off for 27 years before CF required her to undergo a bi-lateral lung transplant in March of 2019. Through the amazing support of friends and family Samantha’s procedure went wonderfully. The invasive procedure ultimately saved her life, although only provided a short-lived relief. Samantha was able to work a full-time job for the first time in her life. She never gave up and knew there was no other choice but to fight and keep living with the second chance at life that she was given.

The year is now 2021 and Sam’s body has begun to form Donor-Specific Antibodies (DSA). This has caused her body to begin attacking the new lungs in an attempt to “remove the foreign invader”. In order to stop this deadly process from continuing, Sam has been undergoing a series of treatments to hopefully stop and reduce the DSA from increasing, but it has been unsuccessful so far and now a more drastic approach is needed. Sam and her doctors have discussed what her options are and have come to the decision to administer a very strong medication intended to wipe out her immune system to kill the DSA and give her lungs a fighting chance. Because of this necessary medication, Sam will need to be quarantined for several months to help keep her safe as she will have no immune system and ANY illness, even something as simple as the sniffles, can claim her life.

Sam has always known that the extra years the transplant gave her were a precious gift that sadly, wouldn’t last forever as the statistics are 50-50 within the first 5 years. And just two years later, Sam is back to fighting for her life. With all due grace, the medication will be successful and Sam will continue living and working with whatever time she has. Our family doesn’t like to consider the alternative of any other outcome, but the reality is that if the procedure is not successful, she will need to go back, and God willing, she will receive a life-saving gift once again.

We are asking for help and donations so that Sam can focus on the treatments and somehow hold herself together in the face of this on-going battle without having to worry about how bills will be met. After fighting back and forth with her employer who refused to approve Short-Term Disability, even though month after month her doctors requested it and sent copious amounts of documentation showing just how serious the situation was, it caused a financial strain. With Sam being out of work since the beginning of April and expected to be out through the end of the year, all of her savings have been drained. She was fortunate for her employer to finally approve her Short-Term within the last couple of weeks which secured her job causing a much needed relief, but in October, the fight will begin again as she must submit for Long-Term Disability. She tried her absolute best to keep herself afloat – going as far as to obtain additional sources of income such as pet sitting and selling off some of her possessions to generate some money; however, with quarantine now ahead, Sam finds herself out of options. She was determined to do this on her own, but unfortunately, CF has made the choice for her. Please know, updating and re-sending this fundraiser out was something she refused to let us do for quite some time as she fiercely believed in being independent despite her condition. 4000 dollars is what all of Sam’s bills will be for the next few months. 4000 dollars was the limit Sam let us request for her. If we can raise the amount, Sam will have enough money to not have to worry about any of her bills and focus on fighting and recovering to the fullest. I know these last two years have ravaged every family in some way – loss and death, grief and coping, as well as financial strife, but I am asking you to please come and donate whatever you can to give Sam a chance at life and at least help her get a shot at living long enough to see many more years.

Our family will be grateful for whatever you can donate, and we will do our best to send a handwritten note to anyone who gives so they may know our appreciation for helping Sam in this dire time in her life. Cystic Fibrosis was never meant to be an adult disease because children never made it to adulthood, but we are changing that one person at time. Help Samantha keep this second chance at life.

Samantha has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!