Hello! My name is Margaret Chandler and I am Chris' mom. He was born on April 9, 1977. He is a first born child delivered by C-section due to size weighing 10 lbs. 13 oz., 22 inches in length. He was immediately diagnosed with severe optic nerve dysplasia, nystagmus and blindness. The neonatal period was complicated by hepatitis of unknown origin. Severe feeding difficulties were present throughout infancy.

Developmental delays were present (walking at age 4). He was receiving speech/language therapy in nursery school for a language disorder and echolalia. By age 4 yrs. An endocrine workup showed him to have a deficiency of growth hormones. He was treated with human growth hormone from age 5 until age 14 yrs.

At age 10.5 years he was diagnosed with hypothyroidism and treatment was begun. His responses, which were very slow, improved somewhat as well as a general improvement in his overall energy level.

At age 16 years he had reached a normal height. At that time his diagnoses included: diabetes insipidus, hypothyroidism, hypoadrenalism, optic nerve hypoplasia with corrected vision of 20/50 in one eye, and developmental delay. An MRI scan confirmed the absence of the septum pellucidum consistent with his above listed diagnoses. The corpus callosum was noted to be intact.

At age 16 years he was diagnosed with hyperacusis. Whether you define hyperacusis as "an abnormally acute sense of hearing or a painful sensitiveness to sound" or as "an unusual intolerance to ordinary environmental sounds" Chris clearly demonstrates hyperacusis. He hears at a -10 Dbhl. This is considered 4 times better than normal hearing. Chris wears earplugs on a daily basis and tolerates most normal environmental sound levels without difficulty.

Chris is currently on DDAVP for diabetes insipidus, prednisone for energy and to handle stress, humatrope (growth hormone) to breakdown fat and for energy and levoxylo for weight control.

Professionals told us that Chris would never see, walk, talk or reach the age mentally of a 12 yr old. Chris has proven the professionals wrong in all of these areas. He graduated from High School in May, 1998 at age 21. He stayed until age 21 to receive additional Daily Living Skills and Vocational Training available to him. He has everything for the mature thought process but his output is delayed so he has a communication device that he can use out in the community to request help. He chooses to travel with a cane and a sighted guide due to his poor depth perception. Chris is a very talented piano player and currently is a self-employed piano player for Nursing Homes. He enjoys computers, Nintendo games and movies. He has a smile that melts you and is very contagious. He has a great sense of humor. He has taught us so much!!

Chris, Margaret, and Brad                                            Chris and His Date

This website has been designed to help empower parents of children with ONH/SOD. All the information herein is subject to opinion. If you suspect your child may have ONH/SOD it is recommended that you seek professional advice from a certified pediatric ophthalmologist. No one individual or company connected with this website assumes any liability or responsibility
for it's contents.