Thanksgiving Day ushered in yet another holiday season, and undoubtedly, over the next several weeks many of us will take stock of what we have to be thankful for. The Krummenacker family of Hicksville has gotten an early start this year.

Two months ago, Laura Krummenacker was admitted to Montefiore Hospital in the Bronx to undergo a life-saving kidney transplant operation. Laura is a 13-year old student at the Hicksville Middle School. She had been diagnosed with cystinosis, a rare genetic disorder, when she was 3 years old, and by that time her kidneys had been irreversibly damaged. Since the discovery of Laura's condition she has been on a strict regiment of medications and dietary supplements, which have curbed the effects of the genetic disorder.

Her kidney's continued deterioration, however, subsequently prompted the transplant. Fortunately, the search for a kidney donor was not a long one; her father, Larry Krummenacker, was considered a perfect match for the operation. As with any transplant, the weeks following the surgery were the most unsettling. Even with what doctors term "a perfect match," the possibility exists that the body will reject the new organ.

Laura returned to school on Monday, Nov. 22 having recovered from the transplant. Her parents, Mary Beth and Larry Krummenacker, are thrilled with her recovery.

"To line her up and look at her you would never think she was the 13-year old standing in a group of five who has a kidney transplant or cystinosis," said Larry.

This holiday season the Krummenackers are most thankful for recent advancements in transplant surgery, and the strides that have been made in treating Cystinosis effectively. Most of all they are thankful for the general good health of their daughter. Because of this, Mary Beth has committed herself to focusing attention on the genetic disorder that affects only approximately 400 people nationwide, and Larry has devoted his time to making people realize the importance of organ and tissue donors.

According to the National Organization of Rare Diseases (NORD), cystinosis is a rare inherited disorder characterized by the impaired transport of cystine, an amino acid, out of parts of cells called lysosomes. The inability of a person afflicted with cystinosis to break down the cystine causes a build up of cystine crystals in tissues throughout the body. The crystals then adversely affect the organs of the body and cause them to malfunction and eventually stop working.

The Krummenackers have been involved in several fund-raisers in the past several years to help raise money and awareness for the cystinosis Foundation, Inc. The Cystinosis Foundation is a not-for-profit self-help organization dedicated to providing information and support to individuals affected by cystinosis. They have also held garage sales and volleyball tournaments to do whatever they could to help out.

"Yes, we have the medication that was developed and is FDA approved, and she is doing well and responding to it," said Mary Beth, who is on the board of directors of the Cystinosis Foundation. "But there are so many things that are still unexplained that if you do not speak out to make people aware of, you are forgotten. And for a disease that only affects 400 you really are forgotten."

According to Mary Beth, the issue now is to keep the Cystinosis Foundation up and running. She has stated that she will speak to anyone who will listen about the illness. She has even gone down to Washington, DC to explain to Congressman Peter King about the disease and the need for continued government support for studying rare diseases.

The prognosis for Laura looks good right now. Since the surgery, her cystine levels have decreased, her energy level has increased, and she returned to school on Nov. 22. But even her mother admits that due to the limited study of the disease there is a lot of uncertainty about the future.

"Because it is such a small community of people with this illness we don't know [what the prognosis for Laura is] . . . It is only in the last 20 years with the research that has been undertaken that these children have lived to be young people. We do not know what the long-term is. . . They will watch Laura, because they want see how far she goes, how long she lives without other problems."

Laura also suffers from another condition that accompanies cystinosis where the body has lost the ability to reabsorb nutrients, such as sodium, potassium, calcium. Subsequently, Laura is on a very regimented course of medication throughout the day where she must continually be resupplemented with nutrients, along with the medication.

Larry admits his greater awareness of the need for more organ donors came down to being tapped on the shoulder and told they were going to take one of his kidneys.

"I'm looking at things differently now as far as tissue donation and organ donation. There are so many body parts that are buried everyday that could be used for people that are on waiting lists," said Larry. "If Laura did not get my kidney, if I was not a match, she could have been waiting a lot longer, too long."

He continued, "It was just a fortunate thing that I was a match. I was lucky that I was able to do that."

According to Larry, who recently returned to work as a dispatcher for the Hicksville Fire Department, the waiting list for many vital organs can reach as high as six years. To those who have decided not to donate their organs or who have never thought about doing so, he asks them to put themselves in a situation where one of their family were sick and needed a transplant. He notes that in many cases, six years is too long to find a donor and subsequently nothing can be done for that ill person.

"There is no factory making kidneys, there is no factory making livers or hearts. It has to come from within ourselves, our thoughts and our desires to help others. If you can draw from within yourself to do that, then you can carry on in a very different way."