Key West, Florida is the type of city that America likes to pride itself on.
Located at the southern tip of Florida, Key West is America’s southernmost city and breathtakingly beautiful. Nicknamed “America’s Caribbean,” it is a tourist haven surrounded by beautiful white beaches and wavy pristine waters. Homes are modest and attractive. Locals are patient and polite, and always extend a friendly greeting. Crime is virtually non-existent.
Sure sounds idyllic, but Key West now has another distinction – one more valuable than anything the ordinary resident or tourist can appreciate.
Though Key West’s Jewish community, particularly the Orthodox community, is quite small, there are now two homes dedicated exclusively to accommodate special Orthodox visitors. These visitors are not just trying to enjoy the sights and ambiance. They are looking to breathe.
These two attractive, yet modest, homes belong to Child Life Society, the pioneering organization serving American Jewish children and adults with cystic fibrosis since the 1990s. The organization’s flagship program is the “Lifeshine Respite Program,” through which those suffering from cystic fibrosis spend two weeks, along with their families, in Key West and experience long-lasting relief from their symptoms. This is based on a conclusion reached by prestigious medical researchers, and confirmed by firsthand experience, that a high salt, aquatic climate significantly loosens the mucus in cystic fibrosis patients when exposed to it consistently for at least two weeks.
Child Life Society inaugurated its first therapeutic respite home, the “Weissman House,” in November 2013. Its second home – practically around the corner from the first – was purchased within recent weeks, and is currently undergoing renovation to accommodate the cystic fibrosis families. Once the necessary funds will be raised, b’ezrat Hashem, and the home will be ready to open, many more families a year will be able to take advantage of this desperately needed relief.
What’s in a home?
Take a look at the new therapeutic respite home and you’ll see a very modest looking dark green abode with an extended driveway, the type you would naturally associate with life outside our nation’s urban areas.
The home is currently being renovated and freshened throughout. The kitchen is being updated and koshered so that an Orthodox family can enjoy it for a two-week period. Child Life Society is extending the home by adding its signature 400 square foot “Key West Room,” where families can lounge and relax while the children enjoy games and kosher entertainment. A swimming pool in the backyard is also in the works.
However, for the children and families who utilize them, these homes are far greater than the sum of their parts.
Baruch Hashem, the overwhelming majority of us cannot fathom what it means to have one’s entire respiratory and digestive system clogged up with heavy, sticky mucus. Neither can we imagine what it means to be a parent watching their beloved young child struggling for breath; have little appetite to eat or energy to play; being pounded during aggressive daily therapy; or laying in the hospital during frequent lung infections.
Unfortunately, for the families who deal with this incurable and rare genetic disease, which disproportionately affects the Jewish community, this is the reality of daily life – and more. Cystic fibrosis ranges in its severity from case to case. In all too many cases, it directly affects more than just the struggle for breath and normalcy for those afflicted, and the need for parents to cope with the round-the-clock stress. It has led to the deterioration of the entire family fabric, affecting parents and siblings of those afflicted as well: divorce, off-the-derech, serious financial strain, and more.
Now, let’s try to imagine if all this can be significantly alleviated by something more powerful than the medications, nutritional supplements, and painful therapy that are part and parcel of these families’ lives.
Thankfully, that’s no longer something that we need to imagine, but something that Child Life Society has enabled families in our community from across the country to experience firsthand. On Lifeshine Respite trips, all expenses are taken care of the entire family, including airfare, car rental, and kosher family. The families enjoy the warm hospitality and resources of Chabad of Key West, which is within short walking distance of the homes. The dedicated Chabad director, Rabbi Yaakov Zucker, and his wife Chanie, tend to the families with exceptional devotion.
Everyone gets to relax and rejuvenate in an otherworldly environment and, most importantly, those suffering from cystic fibrosis feel like different people simply by breathing in the unique wet and salty air around them. Many shut the air conditioning and leave the windows open in the home. It offers relief that comes the closest to a cure of anything around today. They breathe easier, regain appetite, and see their infection rate reduced by about 50%. Many parents relate that, while in Key West, their children require less or none of the supplements or therapy they normally do. The children wistfully muse that they wish to live there all year round, or at least get their hospital to move there!
Most of all, the relief lasts well after the family has taken their flight home from Florida. For 6-8 months or longer, the cross spectrum of cystic fibrosis symptoms and side effects are significantly alleviated due to the therapeutic respite trip. Every day – rather every breath taken – during that period is an entirely different experience.
Broadening the Mission
For Rabbi Chaim Wolkenfeld, founder and director of Child Life Society, this new therapeutic respite home brings him a few steps closer to his mission of serving every child or adult in our community with cystic fibrosis to the maximum possible.
Since the inauguration of the Weissman House, Rabbi Wolkenfeld has found himself in the excruciating position of being unable to accommodate all the children and families clamoring for a therapeutic respite trip. Due to medical considerations, only one family can remain at a home at once, so there’s a firm limit to how many families can be accommodated per home per year. Two homes also offer Child Life Society a lot more flexibility to schedule trips by accommodating individual families’ scheduling limitations and/or last minute cancellations.
In short, the number of suffering families that can be accommodated for this life-altering experience per year has at least doubled. Considering that many of these families have more than one child afflicted with cystic fibrosis – due to its genetic nature – the number of additional children that can be helped is even more significant.
The magnitude of this is beyond description, and is what motivates Rabbi Wolkenfeld and his diverse generous supporters to keep on acquiring, renovating and maintaining new homes in Key West. Various prestigious Sephardic rabbanim and congregations are enthusiastic supporters of Child Life Society and its endeavors in Key West.
They include Rabbi Elie Abadie of Edmond J. Safra Synagogue, Rabbi Shimon H. Alouf of Cong. Ahaba Ve Ahava, Rabbi Yehudah A. Azancot of Cong. Beth Torah, Rabbi Haim Benoliel of Cong. Bnai Yosef, and Rabbi Eli J. Mansour of Edmond J. Safra Synagogue.
Rabbi Wolkenfeld particularly cherishes the time he spent with Hacham Ovadia Yosef, zt”l, several years ago, where he related details about the Lifeshine Respite Program. Hacham Ovadia was extremely impressed. He offered valuable practical advice on how the program should run and placed his hands on Rabbi Wolkenfeld’s head while giving him a warm beracha.
“The challenges in running such a program, and constantly expanding, are daunting,” remarks Rabbi Wolkenfeld. “However, with siyatta dishmaya and help from so many tzaddikim and donors, we continue to make headways.”
A building campaign is currently underway to complete the new therapeutic respite home. All donations will help make the home ready to accommodate its special guests. There are several dedications still available for those willing to become major permanent partners. For more information, please visit www.childlifesociety.org, call 718-853-7123.