Save Ethan's life

Hello.

I hope you are fine and doing well.

I am father of Ethan Lorenzo

I am writing this words for my son. He is suffering from ARSA Metachromatic Leukodystrophy (MLD).

This is a 3 year old with ARSA likely pathogenic mutations and neuroimaging reports and developmental regression consistent with diagnosis of metachromatic leukodystrophy. He is having symptoms of weakness, lost ability for independent ambulation, dysphagia and feeding difficulties, constipation and urinary difficulties, history of respiratory distress and pneumonia x 2, and episodes of stiffening that are not clearly seizure.

I am from Pakistan, and my city is karachi, my son cannot get his treatment there so we applied for his treatment in USA hospital namely "The Children's Hospital of Philadelphia" (CHOP)

They recommend the following treatment for my son:

Leukodystrophy team: multi-disciplinary team:

- Outpatient evaluations and testing with the Multidisciplinary Leukodystrophy Clinic.

- Neurology, Complex Care Pediatrics, Rehabilitation Medicine, Physical Therapy, Occupational Therapy, Speech Therapy with Swallow Function Testing, 

- Nutrition, Genetic Counseling and Endocrinology. 

So, I am requesting you for financial help from your side that will help to save my son's life.