Become One of Anahyia's Angels Today!
If you are reading this, you have taken the time to get to know a little bit about the life of an angel on earth known as Anahyia Leitz-Staver.
Anahyia was born on May 27, 2005. She was a big beautiful healthy baby weighing 9lbs 6oz and 20.5 inches long. As she got older she loved watching Dora the Explorer, swimming, riding her bike, and playing with friends. It was in April 2008, a month before her 3rd birthday, that her life began to change forever. Anahyia started having frequent reoccurring seizures and was referred to the UW Madison Children's Hospital where she was diagnosed and treated for epilepsy. As time went on, the seizures worsened and she began to show signs of mental and physical deterioration. By November 2008, her diagnosis had been changed and she was treated for a rare disease called Lennox Gastaut Syndrome. By December, the seizures decreased but without explanation the mental and physical deterioration continued. In February 2009, doctors referred her to the UW Health Walsman Center for special genetic testing. Test results determined that Anahyia was suffering from Late Infantile NCL (LINCL), a form of an extremely rare disease known as Battens Disease. LINCL occurs in an estimated 2-4 out of every 100,000 live child births in the United States. LINCL occurs only when a child inherits two copies of a defective gene, one from each parent. When both parents carry one defective gene, each of their children faces a one in four chance of developing LINCL. Early symptoms of LINCL usually appear in children ages 2-4 years old. Parents and or doctors may notice a child begin to develop vision problems or seizures. In some cases the early signs are very subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Children eventually become totally disabled and have a life span of 8-12 years. LINCL is not contagious or preventable and at this time, there is no cure. Unfortunately, based on medical research, LINCL has always been known to be fatal.
The side-effects of LINCL started to progress very quickly and began drastically changing the lives of Anahyia and those who love her dearly. By January 2009, Anahyia could no longer walk without assistance, her vocabulary and speaking abilities had significantly reduced, and she was no longer able to dress or feed herself. As her battle continued, she eventually completely lost her use of her motor skills, the ability to speak or smell, and she is now blind. In her 10 short years of being on this earth, she has undergone 6 corrective surgeries and more than 20 hospital stays. Physicians have determined that Anahyia has surpassed the major hurdles associated with the disease. Research shows in previous cases, the lives of the children who battled LINCL ended as a result of pneumonia. On account of the body becoming so weak and fragile, it makes it pneumonia easy to catch but difficult to fight. However, Anahyia has proven herself to be a fighter as she continues to fight after battling through 16 cases of pneumonia.
Anahyia has been strong and fought a long hard battle. However, this last year has been extremely hard for her. She has caught multiple serious cases of pneumonia and as she becomes weaker, the battle gets harder. Based on the information provided by her doctors, Anahyia’s brain is slowly shutting down and no longer communicating with her body. She has recently been put on hospice and the reality of her disease has forced her family to hope and pray for the best, but prepare for the worst.
I ask that you help my best friend in her time of need. She has devoted her life to her daughter and had to quit her job at Mercy Hospital in Janesville, WI when Anahyia was diagnosed so she could provide full support to Anahyia. She has lived on a tight budget throughout the years, but she made it work for them. She made many personal sacrifices to make sure that Anahyia got out of the house daily to experience all of the fun things that life has to offer. I’m asking that you are an angel and bless one of the strongest little girls that I have ever known. Please help her mother prepare for funeral expenses and any assistance she may need afterwards in order to rebuild a financially stable lifestyle for herself. Thank you for your attention to this matter. #AnahyiasAngels
For More Information on Late Infantile NCL- Battens Disease visit:
http://www.ninds.nih.gov/disorders/batten/detail_batten.htm
If you are reading this, you have taken the time to get to know a little bit about the life of an angel on earth known as Anahyia Leitz-Staver. Anahyia was born on May 27, 2005. She was a big beautiful healthy baby weighing 9lbs 6oz and 20.5 inches long. As she got older she loved watching Dora the Explorer, swimming, riding her bike, and playing with friends. It was in April 2008, a month before her 3rd birthday, that her life began to change forever. Anahyia started having frequent reoccurring seizures and was referred to the UW Madison Children's Hospital where she was diagnosed and treated for epilepsy. As time went on, the seizures worsened and she began to show signs of mental and physical deterioration. By November 2008, her diagnosis had been changed and she was treated for a rare disease called Lennox Gastaut Syndrome. By December, the seizures decreased but without explanation the mental and physical deterioration continued. In February 2009, doctors referred her to the UW Health Walsman Center for special genetic testing. Test results determined that Anahyia was suffering from Late Infantile NCL (LINCL), a form of an extremely rare disease known as Battens Disease. LINCL occurs in an estimated 2-4 out of every 100,000 live child births in the United States. LINCL occurs only when a child inherits two copies of a defective gene, one from each parent. When both parents carry one defective gene, each of their children faces a one in four chance of developing LINCL. Early symptoms of LINCL usually appear in children ages 2-4 years old. Parents and or doctors may notice a child begin to develop vision problems or seizures. In some cases the early signs are very subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Children eventually become totally disabled and have a life span of 8-12 years. LINCL is not contagious or preventable and at this time, there is no cure. Unfortunately, based on medical research, LINCL has always been known to be fatal.The side-effects of LINCL started to progress very quickly and began drastically changing the lives of Anahyia and those who love her dearly. By January 2009, Anahyia could no longer walk without assistance, her vocabulary and speaking abilities had significantly reduced, and she was no longer able to dress or feed herself. As her battle continued, she eventually completely lost her use of her motor skills, the ability to speak or smell, and she is now blind. In her 10 short years of being on this earth, she has undergone 6 corrective surgeries and more than 20 hospital stays. Physicians have determined that Anahyia has surpassed the major hurdles associated with the disease. Research shows in previous cases, the lives of the children who battled LINCL ended as a result of pneumonia. On account of the body becoming so weak and fragile, it makes it pneumonia easy to catch but difficult to fight. However, Anahyia has proven herself to be a fighter as she continues to fight after battling through 16 cases of pneumonia.
Anahyia has been strong and fought a long hard battle. However, this last year has been extremely hard for her. She has caught multiple serious cases of pneumonia and as she becomes weaker, the battle gets harder. Based on the information provided by her doctors, Anahyia’s brain is slowly shutting down and no longer communicating with her body. She has recently been put on hospice and the reality of her disease has forced her family to hope and pray for the best, but prepare for the worst. I ask that you help my best friend in her time of need. She has devoted her life to her daughter and had to quit her job at Mercy Hospital in Janesville, WI when Anahyia was diagnosed so she could provide full support to Anahyia. She has lived on a tight budget throughout the years, but she made it work for them. She made many personal sacrifices to make sure that Anahyia got out of the house daily to experience all of the fun things that life has to offer. I’m asking that you are an angel and bless one of the strongest little girls that I have ever known. Please help her mother prepare for funeral expenses and any assistance she may need afterwards in order to rebuild a financially stable lifestyle for herself. Thank you for your attention to this matter. #AnahyiasAngels For More Information on Late Infantile NCL- Battens Disease visit:http://www.ninds.nih.gov/disorders/batten/detail_batten.htm