Details by Debbie Gunning (Jarred's Grandmother):

My daugher Jade (now 22 years old) was blessed to be the mother of a very special boy named Jarred. He is truly the light of our lives but unfortunately there will never be light in his. 

With the assistance of Red Cross Hospital, Groote Schuur Hospital, False Bay Hospital and The League of Friends of the Blind (LOFOB) www.lofob.org.za, we started our journey with Jarred helping with his development which was very slow and after a very drawn out and lengthy process we where hit once again with more devastating news.

Jarred Ethan Bougaardt (5 years old) from Fish Hoek in Cape Town, South Africa

In November 2007 after waiting for over 2 years to have a M.R.I. scan we were given the diagnosis of Jarred’s condition - SOD (Septo-optic dysplasia).

What is Septo-Optic Dysplasia:

Septo-optic dysplasia (SOD) is a congenital malformation syndrome manifested by hypoplasia (underdevelopment) of the optic nerve, hypopituitarism, and absence of the septum pellucidum (a midline part of the brain). In a severe case, this results in pituitary hormone deficiencies, blindness, and mental retardation. However, there are milder degrees of each of the three problems, and some children only have one or two of the three.

Septo-optic dysplasia (SOD) is a rare disorder characterized by abnormal development of the optic disk, pituitary deficiencies, and often agenesis (absence) of the septum pellucidum (the part of the brain that separates the anterior horns or the lateral ventricles of the brain). Symptoms may include blindness in one or both eyes, pupil dilation in response to light, nystagmus (a rapid, involuntary to-and-fro movement of the eyes), inward and outward deviation of the eyes, hypotonia (low muscle tone), and hormonal problems. Seizures may also occur. In a few cases, jaundice (prolonged yellow skin discoloration) may occur at birth. Intellectual problems vary in severity among individuals. While some children with SOD have normal intelligence, others have learning disabilities and mental retardation. Most, however, are developmentally delayed due to vision impairment or neurological problems.

Is there any treatment?

Treatment for SOD is symptomatic. Hormone deficiencies may be treated with hormone replacement therapy. The optical problems associated with SOD are generally not treatable. Vision, physical, and occupational therapies may be required.

What is the prognosis?

The prognosis for individuals with SOD varies according to the presence and severity of symptoms.

PLEASE NOTE THAT JARRED HAS ALL the PROBLEMS Highlighted in Red above

We have started a trust fund to raise funds for the following as we have been advised that Jade has to be Jarred’s primary caregiver until such time as he is ready to go to the Pioneer School in Worcester (after the age of 6):

The funds raised will enable Jarred to obtain all his medical supplies, as the government will not supply the necessary amounts of growth hormone as this is too expensive – he is more than 3 years behind in taking this medication.

This will also enable Jade to transport Jarred to his various doctors appointments which could be either at Groote Schuur Hospital or Red Cross Childrens Hospital, as well as, his physiotherapy sessions at LOFOB (The league of the Friends of the Blind).

To cover all of Jade and Jarred's living expenses / medical expenses until such time as Jarred can go to school full time and Jade can work.

We need to employ a full time facilitator to assist Jade with Jarred from a Monday - Friday.

Thank you for taking the time to read this appeal and we would appreciate any assistance you could offer.

In going forward we want to be able to help other children with similar conditions. We have found that there is very little assistance for children with this condition and we want to make a difference.

We are committed to making Jarred's life as comfortable as we can and this is the reason for needing YOUR help.

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