Friends of Alyse Aquino, Inc.

Alyse Aquino is a 31- year old girl in need special treatment for a rare disorder called  Scleredema.

Alyse was diagnosed with diabetes when she was 7 years old.  She has endured years of uncontrollable diabetes. During her childhood she was hospitalized over twenty times with numerous visits to the emergency room.  At age eighteen, Alyse developed all the complications that result from diabetes- all at the same time.  She has neuropathy (nerve damage), retinopathy (eye disease) gastro paresis (paralyzed stomach).  Alyse became sicker and sicker over the next ten years.  She was mishandled and misdiagnosed by multiple doctors.  Because of this dangerous and frustrating condition, her mother brought her to the Mayo Clinic in Minnesota to try to save her.  The Mayo Clinic was able to diagnose the cause of her degenerative life style.  She was severely anemic due to kidney disease. The doctors at the Mayo also found that she had uncontrolled blood pressure, which added to her debilitated condition.  They were so thorough with their testing, that they found she also had hypertrophic cardiomyopathy (sudden death condition that occurs under extreme physical exertion and a hormone imbalance that makes sugar control almost impossible, in addition to the original complications. 

Ultimately, they found that Alyse was in need of a kidney transplant and this foundation was able to allow her to travel and stay at the Mayo Clinic to receive that life-saving transplant. 

Subsequently, she has been diagnosed with a very rare disease called Scleredema.  Scleredema is the thickening and tightening of the under layers of the skin.  Because of this, Alyse is very limited in movement and range of motion.  Her skin became very hard and stiff.  Her muscles are going into atrophy from the lack of movement.  Alyse endures the pain of physical therapy to try to slow the progressing of atrophy.  The Scleredema also affects her lungs.  She has 70% diffusion capability.  She cannot walk farther than the kitchen from her bedroom twenty feet away. Steps are insurmountable.   She cannot even lift her arms and stay in that position long enough to do her own hair.

Alyse placed all her hope in the transplant, thinking this was her chance at a normal life.  Now with this development, she once again is fighting against the odds to achieve some semblance of a life. 

The problem she is faced with is that the only treatment for her disease is found at the Mayo Clinic or Johns Hopkins.  Both hospitals would require a two-month stay.  Alyse has been to the major hospitals in New York such as Weill Cornell, NYU, Columbia and Mount Sinai, and they do not have the treatment she needs.  This disease is very rare, which is why treatment venue is so limited.  Her family and this foundation has used all the funds available to them to get the transplant.  When Alyse went to the Mayo Clinic for her transplant, they found her in such poor health that she had to stay there 3 months to improve her condition, before they were able to do the transplant. After the transplant she had to stay another month and a half due to a severe infection she contracted.   When this latest complication set in, she had to go back and stay there another three weeks.  She had to leave with this unresolved condition due to lack of funds :there was just no more resources.

We would like to continue this foundation to help Alyse and other like her get treatment that is necessary, no matter where that treatment may be.  Insurance covers the actual treatment, but not the cost of getting that treatment. The foundation will cover all related costs leading up to and after this special treatment, such as uncovered medical costs, travel expenses, lodging and food,  psychological treatment, prescriptions and many other necessities for the patient. We will be extremely grateful for anything you can do.