Sabadosa: Family, friends to hold fundraiser for 6-year-old with PAH
By Regina Sabadosa Citizen Journalist/rsabadosa@comcast.net July 12, 2012 1:12PM
Tatiana sits with her parents, Tom and Sheila Ranftl, and her grandparents, Tom and Vicky Ranftl. | Supplied Photo
Updated: August 16, 2012 6:08AM
When you first meet 6-year-old Tatiana Ranftl, what you see is a tiny, curly-haired girl with smiling gray eyes.
At some point, you may notice the cute little backpack she wears. You would likely be surprised to learn that this backpack contains a pump attached to a central line that releases the heart medication needed to keep her alive.
Tatiana was in her kindergarten gym class a few months ago when she fainted and then turned blue. Tests revealed that she has a very rare genetic lung disorder known as idiopathic pulmonary arterial hypertension — commonly called PAH.
PAH is more commonly a side effect from a variety of medical conditions mostly affecting young adults. In most cases, PAH is treatable. For Tatiana, her genetic makeup currently allows no chance for a cure. She wears the pump 24/7.
Maintenance of the pump’s operation is highly sensitive and is done many times a day only by her parents. Tatiana is very limited in her activities. Her mom told me she cannot run around like other 6-year-olds and that stairs give her the most problems. She cannot swim anymore since the pump cannot get wet.
Tatiana and her parents, Mike and Sheila Ranftl, must travel every three weeks for her check-ups with a pediatric heart specialist at the New York Presbyterian Hospital. After insurance, it costs the family more than $3,000 out of pocket per month, in addition to the cost of her New York trips.
Tatiana is a bright little girl who has a quick wit and loves to draw. She seems very comfortable around adults for being so young.
Recently, Tatiana’s family was told that she will be the recipient of a Make a Wish five-day Disney cruise on Aug. 5. Her parents and older brother and sister will be able to join her as well.
Vicky Ranftl, Tatiana’s grandmother, lives in Alsip and contacted me to get word out about an upcoming fundraiser to help defray the cost of Tatiana’s rising medical expenses.
In addition to monetary and raffle prize donations, Ranftl is asking interested groups — especially area youth groups — for assistance in passing out fliers for the fundraiser, which will be from 4 to 9 p.m. Sept. 15 at 115 Bourbon Street, 3359 W. 115th St., Merrionette Park.
If you can help out in any way, please contact her at (708) 254-7275. More info about Tatiana and this event may be found at her web site at www.onebreathatatime4tatiana.org. Tatiana also has a Facebook page which you may find by typing in her email address 1breathatatime4tati@gmail.com on Facebook.
The Ranftl family wishes to thank Frank from HP Memorial Printing in Alsip for the donation of 1,000 fliers and 20 posters announcing the event. Also thanks to Mark Plocharczyk for Tatiana’s web page design. Finally, thanks to Tim Evoy for his donation of the printing of the raffle and admission tickets.
News from Our Neighbors
Our Savior’s Lutheran Church, 8607 S. Narragansett Ave., Burbank, will offer its annual Vacation Bible School from 6 to 8:30 p.m. July 23 to 26. Register by calling (708) 599-4780.
Oak Lawn’s Linda Nelson is declaring July 28 as “Nick’s Christmas in July” to memorialize the day 10 years ago when her then 17-year-old son Nick Nelson died suddenly from a congenital heart condition. Nelson is seeking donated items for the patients at the Heart Institute for Children at Hope in Oak Lawn. Please contact her via email by Friday at lindalee61@yahoo.com for more info.
Hometown/Gaddis/Our Lady of Loretto is having an all-year grammar school reunion from 8 p.m. to midnight Aug. 11 at 115 Bourbon Street in Merrionette Park. Tickets are $40 per person and must be purchased by July 27. Contact Karen (Heiden) Ward at (815) 514-5977 for further info.
