If you're on this site, it's because you've newly become acquainted with a genetic disorder called Sandhoff's Disease. My goal with this blog site is to increase awareness about the occurrences of Sandhoff Disease in Arizona and throughout the United States.
Dubbed, "an orphan disease", Sandhoff's receives little attention, and by consequence, little funding for medical research. All the while, children are dying and families are ripped apart by the ravages of this neurological wasting disorder.
Through raising awareness, I believe the right people will get involved to continue the fight to find a cure as well as implement support systems for the ones suffering right now.
Thank you for visiting this site. Please remember to check back often - or subscribe for updates!
About Me
- Amber Medrano
- I am the mother of an Autistic child and also a Sandhoff child.
2 comments:
2008 press release
July 19, 2008
My name is Liahla Roberts-Valdez. I am 27 years old with 6 children and 6 step-children. My youngest, Teresa Villalpando, has Sandhoff disease. This disease is so rare, there is no known treatment or cures for it. Through my daughter’s story we hope to bring awareness of this terrible disease, which is taking my daughter’s life. We hope that it will give rise to further testing and possible a cure so that in the near future no parent will have to experience the same loss as I am.
On July 17, 2008, the Department of Immigration helped us by giving my step-daughter, Karen Villalpando, emergency permission to enter the United States to meet her baby sister for the first time. At the time Teresa was under going a major risk surgical emergency procedure at St. Joseph’s Hospital. Thankfully everything was a success.
Teresa is a 1 year old baby girl that has gone through so much; for 11 months we could not figure out what was going on. It was so frustrating seeing my child go through so many different tests. The scariest thing for me was seeing her loose all her achieved milestones right in front of my eyes. I will never forget May 10, 2008, the day where in the morning she was able to sit down but, by that same afternoon this ability was gone forever. I will never see my child sit again. I can see her slowly becoming less interactive, as time goes on. Her beautiful smile, the sparkle in her eyes is slowly going away. She is not all there now her abilities and capabilities are slowly disappearing. While going through this the dreaded day came when cherry spots were discovered in her eyes. The worst of our fears was becoming a reality; she had the very rare degenerative disease, Sandhoff. This meant that her time with us had become very limited. I held the news to myself for a few days. Tall I could think of was, “How am I going to tell my other children that their baby sister was dying?” After evaluating my life I decided that everything I had gone through in life was t prepare me for this very moment and I was not going to accept this terrible experience but, be grateful for every moment and everything it had brought to my life.
Sandhoff disease is a rare metabolic disorder somewhat like Tay-Sacks disease but more severe, causing progressive deterioration of the central nervous not limited to any ethnic group. Sandhoff disease is diagnosed in 15 to 20 children in the United Sates every year. Symptoms of this disease may include muscle weakness, loss of motor skills, startle reactions, uncontrollable muscle contractions, seizures, mental retardation, doll like faces, cherry spots I the eyes, blindness and paralysis. Prognosis for children with Sandhoff is poor. Most children die by the age of 3 years old.
Teresa is being taken care of by Cecilia Avalos at Desert Valley Pediatrics in Avondale, Arizona. She has taken care of Teresa since her birth, seeing her as often as needed. She is also being cared for by the great staff at St. Joseph’s Hospital in Phoenix, Arizona. The doctors there have well documented her case. I have also been working with the hospital’s PR department so that the doctors can speak openly with the media about my daughter’s case and Sandhoff disease.
I have included the contact information for several sources including my own.
Liahla Roberts-Valdez Hide and Seek Foundation
Hm: 623.4872.1664 Gina Watkins
Cell: 623.329.3758 904.662.1840
Email: teresavillalpando@live.com Hm: 904.814.8552
http://www.myspace.com/helpteresa Gmwatkins74@yahoo.com
http://www.hideandseek.org
http://www.sandhoffdisease.net.com
St. Joseph’s Hospital and Medical Center National Tay-sachs and Allied Diseases
Public Relations www.ntsad.org
Carmelle Malkovich
602.406.3319
602.406.4190
emalkovich@chw.edu
###
There is a safe & effective Natural Herbal Medicine. For Total Cure Call +2349010754824, or email him drrealakhigbe@gmail.com For an Appointment with (Dr.) AKHIGBE contact him. Treatment with Natural Herbal Cure. For:Dengue Fever, Malaria. Painful or Irregular Menstruation. HIV/Aids. Diabetics. Vaginal Infections. Vaginal Discharge. Itching Of the Private Part. Breast Infection. Discharge from Breast. Breast Pain & Itching. Lower Abdominal Pain. No Periods or Periods Suddenly Stop. Women Sexual Problems. High Blood Pressure Chronic Disease. Pain during Sex inside the Pelvis. Pain during Urination. Pelvic Inflammatory Disease, (PID). Dripping Of Sperm from the Vagina As Well As for Low sperm count. Parkinson disease. Obesity, Lupus. Cancer. Tuberculosis. Zero sperm count. Bacteria, Toxoplasmosis, Diarrhea.Herpatitis A&B, Rabies. Asthma. Quick Ejaculation. Gallstone, Cystic Fibrosis, Esquizofrenia, Cirrhosis, Premature Ejaculation. Herpes. Joint Pain. Stroke. Coeliac Disease, Weak Erection. Erysipelas, Thyroid, Discharge from Penis. HPV. Hepatitis A and B. STD. Staphylococcus + Gonorrhea + Syphilis. Heart Disease. Pile-Hemorrhoid.rheumatism, thyroid, Autism, Penis enlargement, Waist & Back Pain. Male Infertility and Female Infertility. Etc. Take Action Now. contact him & Order for your Natural Herbal Medicine: +2349010754824 and email him drrealakhigbe@gmail.com Note For an Appointment with (Dr.) AKHIGBE.I suffered in Cancer for a year and three months dieing in pain and full of heart break. One day I was searching through the internet and I came across a testimony herpes cure by doctor Akhigbe. So I contact him to try my luck, we talk and he send me the medicine through courier service and with instructions on how to be drinking it.To my greatest surprise drinking the herbal medicine within three weeks I got the changes and I was cure totally. I don't really know how it happen but there is power in Dr Akhigbe herbal medicine. He is a good herbalist doctor.
Post a Comment