This page last modified on Sunday, March 28, 2010
For information on Variety - The Children's Charity of Buffalo & Western New York,
Please call us at (716) 854-7577 or e-mail us at:
vcstaff@varietykidstelethon.com
49th Annual
Sunday March 6, 2011
Official Countdown To Telethon 2011:
Irene ("Ree-nie") Ananiadis is a beautiful three year old little girl who when she was 13 months old was diagnosed with ITP. Immune thrombocytopenic purpura (ITP) is an autoimmune disorder characterized by low platelet counts, typically in otherwise healthy individuals. ITP can be triggered by a range of viruses. When your body tries to fight off the infection it also fights off its own platelets, there is confusion so to speak. Since her diagnosis, her life has been greatly affected.
She started to experience flu like symptoms, and severe bruising all over her body at 13 months old especially her lower extremities, and they are just not your average bruise they are very dark in color and turns different shades when her count drops to very low levels which would eventually lead to a high fever and a series of seizures. That earned her a ride in the ambulance to Buffalo Women & Children's Hospital. When it started affecting her, it showed through dark red dots & bruises covering her body dark circles under her eyes that are not your average rings under the eyes and bleeding at her gums, and she becomes more needy than usual, and weekly blood draws at the hematology clinic show the levels of her platelets. Her blood test can be painful and traumatic for Irene to go through, especially on such a frequent basis. The average person's platelet count is 500,000/uL. Irene's has dropped as low as 9,000/uL. When Irene's platelet count drops to the 20,000 range that is when she goes in for her treatment, usually every two months. Or it all depends on if her count has dropped it could be any time. The wonderful doctors, Dr. Megan Higmen, hematologist & Dr. Maxine Szumigala is her pediatrician that are monitoring her condition.
She gets admitted overnight at Buffalo Women & Children's Hospital. They perform a procedure where she is orally given Benadryl & Tylenol in order to receive the intraveniuous medication for 12 hours. After her treatment. some side effects do occur including vomiting and flu like symptoms and last for 12 to 24 hours. After the medication her count increases to well over 200,000/uL. That's only if her body doesn't reject the treatment she get's, and if her body rejects her treatment they have to re -administer the treatment again and hopefully the treatment will take, when she was first diagnosed she was in for a treatment every 2-3weeks now she is a little older her body excepts the treatment and that she just started to produce her own platelets on her own, That is a miracle in itself. But it is still very hard on Reenie but she has become a very strong little girl and Children's Hospital is wonderful to her and her family!
The staff is remarkable. The Hematology floor and all the staff at 140 Hodge that draws Reenie's blood weekly has become are friends and like family to us they know us by first names and they treat Reenie like she is the queen when she is there. Variety Floor 8 is where Reenie is a regular customer. The hospital is truly geared toward children, with a recreational room to please any age, available 24 hours a day. She has made many friends on that floor. The children are the TRUE HEREOS to endure treatment after treatment with courage & hope.
ITP is a disease that Irene may eventually out grow, or something that she will have for a long period of time. It is crucial that she has no severe head or body trauma at this time. Her body would not be able to produce enough platelets to stop any kind of bleeding, so hemorrhaging is a major concern. The duration of her condition is an uncertainty, but in the mean time Irene and her family takes the necessary precautions to make sure that her condition stays under control. She can live a relatively normal life until she either out grows ITP or a cure is found.
Other treatments for ITP include prednisone which helps to induce a rise inplatlet counts; Rhogam has also been used for RHpositive patients. Platelet tranfusions cannot be done, as the body's antibodies which it produced will attack these platelets as well.
Currently there is NO consensus on the management of acute childhood ITP. The American Society of Hemotology has published treatment guidelines for adults, but there remains significant disagreement. There is consensus that patients who are bleeding significantly do require treatment.
Splenectomy (spleen removal) is a consideration for the older child with severe chronic ITP whose symptoms are not easily controlled with therapy
Reenie has two sisters, Sara “Saia” age 5 and Sofia age 1½. Her Dad Niko and mom Karianne are proud parents. And have a wonderful big family that always helps out and a great group of friends that have been there support through all of this and are ever so grateful to all of them!!!!
In September of 2006 Dani had her first visit to Women & Children's Hospital of Buffalo. She was admitted to undergo several tests after being diagnosed with dermato myositis, a auto immune disease.
On November 2, just days shy of her 9th birthday, Dani suffered a stroke. She was admitted to WCHOB where she was cared for by a well-trained team of doctors and nurses in the ICU.
We were introduced to another team of specialists just a few days later. The Nephrology team became involved due to the deterioration of Dani's kidneys function. A biopsy of her kidney led to the diagnosis of scleroderma, a connective tissue disorder. She was to begin dialysis treatments due to Kidney failure which would continue beyond her 6 week stay at the hospital.
Over the course of the next few months, the dialysis team became like family. Dani would go for treatments 3 times a week.
We came to a point when we needed to make a quality of life decision and we opted to begin dialysis treatments at home every night. Mary O'Shea saw to our training personally.
Dani's kidneys have recovered to the point of no longer needing dialysis. She continues to need blood pressure medicine and continues immune dippressive medicine.
Dani, today is 11 years old and is in the 6th grade in the Holland Middle School. She is into computers and wants to be a cheerleader. When she grows up Dani wants to become a Veterinarian. Dani says that Women & Children's Hospital of Buffalo is an ok place to go when you are sick and when she has to go back, she would not be afraid to go.
Dani has an 8 year old brother Dillon who attends Holland Elementary and is involved in wrestling, hockey and football. Dillon has many trophies that he has won for his sport participation.
Devan is Dani's older sister. At 14 years old, Devan is in the 8th grade at Holland Middle and participates in cheerleading and field hockey. Devan enjoys her time on the computer and maintaining her MySpace page.
Dani's mom Stacy and father Greg are very grateful for having such a top notch hospital available and involved in Dani's healthcare. Stacy recently commented “They are life savers. Our family would not have Dani without the hospital.
Dustyn is an 8 year old little boy who was born on July 22, 2000. Dustyn was born at 29 weeks gestation weighing in at 3lbs 15 oz. He was born at Olean General Hospital and then transported by ambulance with a team of medics to Women & Children's Hospital of Buffalo to the N.I.C.U. It was there that he spent the first 44 days of his life.
When Dustyn was first taken to Women & Children's Hospital I was unable to go with him because they would not discharge me from the hospital until at least 12 hours after delivery. That was one of the hardest moments in my life when they took my precious new born baby 2 hours away and I was unable to be with him. The team at Women & Children's Hospital of Buffalo and the ambulance crew were absolutely phenomenal with keeping me posted on how our baby was doing. They called me directly at Olean General Hospital and let me know that they had arrived at Children's and he made it through the travel ok and they had him on a ventilator and I could call at any time to check on him.
Everything seemed to be going fairly well with Dustyn the first couple weeks of his stay; we did have a couple of setbacks. The NICU team that was working with Dustyn said that is to be expected considering he was born so early and he was so small. They did a great job of keeping us informed of all the things that were going on with our precious child. Dustyn was about 3 weeks old and Dr. Bomaraju who was taking care of Dusty had taken me into a conference room and explained that they had done a head ultrasound on him, which is common in premature babies. They found what they call periventricular leuko malcia (PVL) which is damage to the white matter of the brain. Dr. Bomaraju took the time to explain everything to me and even had a couple specialists from the hospital come in and talk with us to help us understand what this meant.
Dustyn enjoys playing the Nintendo Wii and Playstation. He likes to play hockey against his Dad. Dustyn also loves to draw and create paper masterpieces. Dustyn is a very social young man who has no problem talking to everybody including his many girlfriends.
Dustyn has an 11 year old sister, Haileigh. She is in the 6th grade at Allegany Limestone Middle School. Haileigh loves to play soccer, plays the flute, is a great Nintendo DS Player and collects Webkins and dolphin items.
Walker, Dustyn's younger brother is 4 years old and love to play with Dustyn. Walker enjoys playing cars and tools and really likes when Dustyn gives him a ride on his wheelchair.
Dustyn is now in the second grade and doing very well. He is always the talk of his teachers and everyone else that knows him.
