- Posted June 21, 2014 by
This iReport is part of an assignment:
Raising a special needs child
Rare Blood dieases and DiGeorge Syndrome Heart to heart with the family
Hello my name is Christy Whitner and my husband is Antoine Whitner Sr. Being parents of four children, we are struggling. The beginning of the breakdown of our family began November 2013 when we received the notification that our disabled daughter was cutoff of Medicaid due to the income of our household. The Social Security department went on to say that they had over paid my daughter for three years and we told us that we were over paid by $22,819.00.
The buildup continued when my husband had to resign from his job in December 2013 due to poor health issues. The following month he would receive devastating news about his health which had been unstable for the last two years and everything began to catch up with him. Dealing with a condition called spondylosis of the spine. He had an emergency of the spine in October 2012 and this surgery dealing with syncope’s and spinal fluid leak. The issues that were fixed in this surgery left him partially paralyzed in the right leg, which is a condition known as drop foot. He continued to work after 6 weeks of recovery. In February 2014 he needed another surgery to stop the spinal leak. He underwent this surgery and the recovery was very slow, he later found out that his diabetes was erratic and he had to attempt to get it under control. Only to find out from several specialists that he was in Stage 1 kidney failure and has a weak heart, blood pressure and Cholesterol problems all at the age of 34.
The trials had only begun he applied for Social Security January 20th 2014. All the medical bills have built up with the co-pays, co-insurance taking its toll on us. With my income the Texas Health and Human services stated that I made to much money to receive any help. Even though I have being paying $400-$500 plus a month in medication, doctor’s appointments and co-pays it has been too much. I have struggled so much. We have still not heard an answer from Social Security about his claim.
My youngest daughter Alahna is our biggest concern, the lack of Medicaid coverage and money to pay for doctor’s appointments, medicine has caused us the greatest grief. No matter that fat that I have Aetna healthcare insurance from my employer that I pay $600.00 a month to have the insurance doesn’t cover everything and we have a large amount of bills.
Alahna was born February 2, 2001 at Hurley Hospital in Flint, Michigan. She was diagnosed with DiGeorge Syndrome before her birth and was transported by ambulance to Detroit Children Hospital after ten days. At Detroit Children Hospital, several Cardiologists performed open heart surgery on Alahna, closing four holes in her heart and placing a conduit pulmonary valve from heart to lung.
Alahna spent the first a months of her life in and out of the hospital. She code-blue on one occasion.
She was fighting for life and won.
Living with DiGeorge Syndrome, has been an uphill struggle for Alahna. She has had multiple surgeries,
Seen numerous doctors, have had all kinds of blood test. She has been poked, prodded and other procedures that would make a grown person cringe. She sees Cardiologist, Hematologist, Neurologist, Dental surgeons, Psychologist and other lab techs , Echo Techs………Eye Ear And nose Specialist and immunologist
Alahna had her 2nd heart operation in 2006, to replace another conduit because this art does not grow with her and has to be replaced. In 2007, she underwent surgery to repair a hole in the roof of her mouth to repair a sub-mucus cleft. She has a speech impediment because of this even after several months of Speech Therapy. But Alahna presses on.
Because of her, DiGeorge Syndrome, also known as 22q11.2 deletion syndrome, Alahna suffers from many symptoms of the disorder such as heart abnormalities, cleft palate, problems with immune system, speech impairment, depression, some loss of hearing, repository difficulties
Alahna and family have lived in Houston, Texas since 2008 and she is now being provided service at the Texas Children Hospital. Since she has been there, she has had another surgery in her mouth during the removal of her tonsils and adenoids. During this surgery, Alahna had a severe bleeding which was stopped but triggered a visit to the Hematologist and Oncologist.
After seeing the Hematologist Alahna, was diagnosed with several blood diseases. She was diagnosed with MYH8, Von-Willie Brand disease, Thrombocytopenia. Because of these diseases, Alahna must take special precautions. She was not able to have recess at school, cannot play any contact sports.
And numerous precautions have to be taken before any surgical procedure can be done. Before Alahna can have any dental work done she must have an Echo on her heart, also blood transfusions and several antibiotics. It is an ongoing situation.
In 2013, it was determined that Alahna has Scoliosis and is expected to have surgery sometime this year (2014) to correct a curvature in her spine.
Alahna has had over 30 surgeries in her 13 years of life. She is a fighter and will continue to do what she needs to do with the help of God and her parents.
Because Alahna has to go to several doctors at any given time ,her parent have continued expenses and hardships struggling to pay for office visits ,co-payments , medicines , transportation and
Financial burdens have been a large financial hardship for her family. But they will continue to try to provide whatever Alahna with whatever resources they have to get her medical needs met.
Alahna was on disability, but Social Security decided that she shouldn’t continue to get Medicaid or any help at all.
Well here is our story, that I hope you find it in your heart to share our story. We are currently in the process of losing our current home to move in an apartment so that I can cover the cost. We have two cars that are in the midst of acceleration that will re-possessed from the financing companies.
I hope that this letter finds a heart that cares about our daughter’s heart and her family.
Please let me know if you can help our family.