Zecharia Adler is thankful.
Though his youngest daughter, Leeba, was born with multiple medical problems, including insufficient lungs, chronic kidney disease and a developmental delay.
Though the Thornhill resident and his wife have had to put their lives on hold to care for Leeba.
Though the 27-year-old has resorted to having a major operation to save his two-year-old daughter.
Though he will be out of commission for six to eight weeks with no guarantees as to the success of the operation.
Though he has been told that once he donates his kidney, it will only last about 15 to 20 years.
Yet, Mr. Adler is still thankful. Thankful for Leeba’s first few minutes of life. Following his daughter’s delivery at North York General Hospital on Jan. 11, 2010, there were several doctors around. She had been in breech position and the doctors were there in case it was a c-section.
“We were lucky. There were extra doctors on hand in the first couple of seconds of life which are crucial,” he said.
Mr. Adler is even thankful for the little girl’s kidneys.
“When she was born, the doctors at The Hospital for Sick Children said that these tiny little kidneys could surprise us. They can last a day, week, month or year. Thank god they have surprised everyone for the past three years,” he wrote in an e-mail.
He even manages to find a positive aspect to the process he had to go through to become Leeba’s kidney donor. It took a year full of tests and x-rays to get to this point which he says was better than a very thorough check-up.
“You get a full work-up most people aren’t entitled to,” he said.
He is even thankful for how the human body was created.
“We are lucky we were created with two kidneys but only need one to live,” Mr. Adler said.
Mr. Adler and wife Dena, are both 27 and have two other children, Binyamin, 4 and Shifra, 5.
Was Mr. Adler’s decision to give up his kidney for his little girl difficult?
“You would give anything for them (your children). It wasn’t even a thought,” he said.
Mrs. Adler is thankful the family is in Canada. She is originally from Florida.
“We are grateful to be in Canada,” she said, pointing out that in Canada, many medical expenses are covered.
But, there are plenty of expenses that are not covered.
Leeba requires almost daily occupational and physical therapy as well as speech therapy. She needs therapy to help her learn to get dressed and other activities of daily life such as eating and even learning how to properly play. The couple describes it best on their web site: “We understood that vital basic skills, like eating, walking, talking, progressing cognitively and developing social skills would only be achieved by providing her with therapists who were specially trained to address these exact issues. By building up her muscle tone, giving her positive food experiences, teaching her to coordinate her swallowing to avoid aspirating (where food goes down the wrong way), sending her to special education teachers who were able to do magic, we have come a long way”.
Certain medicines are covered by the Trillium Drug Program but many are not. Some drugs she requires are covered but not in a kid-friendly form such as in liquid form. Leeba also requires a drug for reflux which was recalled in the U.S. and Canada, but was recommended for her by a gastrointestinal specialist.
The couple predict Leeba will have just as much need for therapy and medicine post-operation.The kidney donation surgery is today, American Thanksgiving. Father and daughter will be in operating rooms in different hospitals at roughly the same time — 8 a.m. He will be at Toronto General Hospital. She will be at The Hospital for Sick Children.
The Adler parents are hopeful. Hopeful that the new kidney will bring their little one a quality of life she never previously enjoyed.
Right now, her kidneys don’t function properly so she has toxins in her blood and she feels nauseous. Her sleep is so poor that when they brought her to a sleep clinic, one of the doctors said: “She is the most ridiculous sleeper he has ever seen,” Mrs. Adler. The two-year-old also uses a feeding tube.
She has gotten used to medical procedures. She has blood drawn and doesn’t flinch because she is so used to it.
Mrs. Adler describes The Hospital for Sick Children as “a second home”.
But there is more to Leeba beyond medical treatments and her health issues.
Ruchoma is her full name but everyone knows her by her middle name, Leeba.
She likes watching Dancing with the Stars with her grandmother after bedtime.
“She likes to laugh, makes an effort at laughing. She likes being challenged. She likes them (therapists) getting her to work,” Mrs. Adler said.
“She has a certain excitement. She makes you feel loved and helps you connect with her,” she said.
The parents are looking forward to watching the little girl grow post-operation.
“We are excited to see how her personality will grow while she is feeling good,” Mrs. Adler said.
But the uncertainty in what they face is undeniable.
They know for the first three months, the risks are highest. Leeba will spend the first month in hospital and over the following two months will likely have to spend a few hours each day there.
While the family is nervous and anxious about the surgeries, it is also excited.
“It will open a lot of possibility both medically and cognitively,” Mrs. Adler said, adding “We are very realistic.
“We have optimism … we know not to glance too far to the future.”
A fund has been set up in Leeba’s name.
Visit www.helpingleeba.com to make a donation or read the latest on how father and daughter are doing.