Holly came into our world on January 9th 1998, a beautiful summers afternoon here in Australia. Being our first born we where overjoyed with excitement and pride for our beautiful little girl. Everything seemed normal to my husband and I.Holly was never much of a sleeper though and had us on the run constantly at all hours.

By the time Hol was three months old our families seemed concerned with her lack of focus.So I asked my local childhood nurse what I should do. she suggested we see our optometrist,so off we went for what we didn't realise, would be our first of many visits to specialists.

Here we where told that her eyesight was fine, to give her some time that her muscles where simply weak and with time they would control her 'wondering eyes'. By six months Holly seemed to be still at an almost "newborn stage".Watching her in her pram in the foetal position or snuggled into me seemed natural to us.(It was only afterward we opened our eyes to other children the same age and discovered that Holly wasn't doing any of the reaching or giving the inquisitive looks that other six monthers were.)

Once again our childhood nurse referred ur to our doctor this time. He examined Holly and told us he would book us into an ophthalmologists have her examined properly. We where very lucky to be slotted in the very next morning. So with a nervous mum and dad off we trotted to the 'New Children's hospital'.All the while the entire trip I was hoping "my goodness I hope she doesn't need glasses".I now find that laughable as I would give my own sight to allow Holly the smallest glimpse of our world as I see it.

So here we where sitting in the ophthalmologist clinic totally unaware of what we where about to be told.The news hit me very hard, I just couldn't believe what we where hearing.I wanted answers and I thought I should have them there and then.In realisation I knew ir would be a long road before we got any concrete information out of our specialists.

My husband became my pillar of strength until I could see past the "what Holly can't do's" and into just what she could and would be able to accomplish. So the myriad of doctors and tests began.Hol had an MRI at 7 months which concluded what the specialists had thought,she has Bi-lateral Septo Optic nerve Hypoplasia with her septum pellucidum underdeveloped.Holly has no sight or light perception all.Over the following weeks we where exhausted ( and Holly's patience had certainly come to an end) after visits with neurology,ophthalmology and endocrine doctors,not to mention the Royal Blind Society and numerous other community services.Holly crawled at 10 months and was walking by 15 months.

At 14 months Holly was tested for diabetes insipidus because of the amount of fluids she drank.She was given DDAVP (which unbeknown to us was still experimental in Australia).Holly's body did not cope well with the amount of hormone she was given and consequently ended up on machine's to monitor her breathing,heart rate and saturation as all where failing dramatically.Holly began to fit which sent all included into overdrive including mummy and daddy.She was put on phenobarbitone to decrease the chances of futher seizures ,thank goodness this only lasted a short while, just a few weeks.

Holly did have physio until she was around 18 months and now has an Occupational therapist and a Mobility instructor visit her on a weekly basis.Hol is slowly coming along with her cane skills needing only a little help from me.Yet still needing alot of encouragement as she feels she really shouldn't need to lug the heavy thing around.

She constantly amazes me at her understanding of the world around her.Hol uses echolasia quite alot till, hence sounding as though she is a very intelligent child.Though alot of the time I recall the exact phrase coming from my mouth.( we really need to watch what we say now, you can guarantee it will always be repeated and usually at the most inappropriate times and places).Holly will walk outside and say"it's a very bright sunny day today" or "it's dark outside now it's night time", precisely what we have told her. Her personality is wonderful. When she laughs she lights up the room but when she is sad or angry it is to the extreme. As long as holly gets exactly what she wants when she wants it she's happy,if not you can be assured everyone within screaming distance will know of it.

Holly has began pre-school at the vision-ed school with the Royal Institute for Deaf and Blind and is loving it.Counting down the days until she gets to go again.though she does insist their routine must stay the same.Her social interaction has progressed since attending school.She still tends to play alone or with the adults most of the time yet she's slowly come to accept the other children being around and is warming to her peers.

Holly is to be assessed soon informally to conclude whether she has mild autism or some kind of behavioural problem.Recently she started taking"Catapres" to help her sleep.At 3 1/2 I think we all needed sleep. She may seem like a handful to some or just hard work to others but to us she is our beautiful Holly Dolly whom we can't imagine life without.I'm so proud to be this angels mummy!

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.