KATIE FOWLER
Written with love by:
Holly Jackson & John Fowler

Our darling daughter "Katie" (Margot Kate Jackson Fowler) was born in Townsville, Queensland, Australia on 12 October 1996 (almost 2 weeks overdue) by emergency caesarian (foetal distress) following a perfect pregnancy - a healthy 3.2 kg (7lb 3 oz) and 51 cm long. Our first days were blissfully happy – our baby absolutely perfect.

At first there was no hint of the heartbreak and seemingly shattered dreams so soon to follow, although it did seem that her ‘cry’ was very different to all the other babies we could hear. Finally concerns were gently raised. Our baby had a ‘small head’. Katie had been noted with microcephalyat birth (head circ 31.5 cm). A cat scan when she was three days old revealed Agenesis of the Corpus Callosum (ACC), enlarged third and fourth ventricles, and many other anomolies. Our beautiful baby had major malformation of her brain. Dandy-Walker Variant was suggested then, and confirmed by MRI when Katie was six months old. By day four we had yet another suggested diagnosis - Optic Nerve Hypoplasia (ONH). It was ten days before Katie opened her eyes.

We understand the ‘big picture’ as painted by Katie's specialists and therapists - a darling little girl with very low vision, who will have limited mobility, who may be unable to walk, who may never communicate through speech, who may have frequent seizures, who is severely delayed in every area of her development, who may be profoundly intellectually impaired. But then again – maybe not – we will never give up hope. The one thing everyone has given us since the very beginning is HOPE .. and the message to NEVER GIVE UP! We have been overwhelmed by, and so grateful for the amount of support we have received since Katie's birth. At the hospital we were told to take our baby home, shower her with LOVE, and STIMULATE! STIMULATE! STIMULATE! Well, this has certainly been the easy part. Our little girl is just so very easy to love.

Today Kate is a very happy, healthy, cuddly little one - a true snuggler. At 2 years 9 months, Katie has low vision (probably ‘legally blind’), Epilepsy (good control with drug therapy in combo with homeopathy remedies), Cerebral Palsy (spastic quadriplegia) and major developmental delays in all areas. In relation to vision, Katie has bilateral ONH, strabismus, and nystagmus, but despite all we are delighted that her use of vision continues to develop as she has. Although still unable to tell or show us what she ‘sees’, we believe Katie sees ‘best’ with her left eye (although still very limited), with her right eye mainly sensing light/dark perception at this stage. We are unsure whether she has peripheral or central vision (or both). Her ability to track continues to develop slowly but surely, and we believe she is trying hard to focus on objects close by. Strabismus surgery (3 muscle) February 1998 was fairly successful and we believe has actually helped her to use her vision more effectively.

Katie has thrived since birth, but ‘transition from liquids to solids’ remains a major issue. Although still very orally defensive Katie has recently mastered drinking from a training spout. Yippeeeee! This is real progress! (I think we could write a report on every type in the market place by now!?!) We have been trying to switch across for over 18 months- suddenly one day – Katie finally ‘got it’! ‘Real food’ however still holds no allure at all, mainly because coordinating her chew/swallow is still so exceptionally difficult. Oh well – one day! A G-tube (since March 1998) has helped enormously with maintaining adequate nutrition and fluid intake.

Katie is our little cutie, and a very determined little one at that! Her delightful personality is just beginning to emerge and at times she seems positively cheeky! This is such a thrill for us all. Smiles which eluded us for most of her first year (first smile at 10 months), are now frequent and wide. Kate now responds readily and appropriately to a wide variety of stimuli. She particularly adores toys that play musical tunes, and can be quite captivated by colourful flashing lights.

Although to many Katie would still appear floppy and either generally unresponsive or over-sensitive to her world around her, we have all learnt to read her so well. She just struggles so hard to do the things that so many others often take for granted. Katie seems so motivated to achieve so much, to move any way that she can, to "talk" to us any way that she can, to make us ‘understand’ her any way that she can, yet is held back so much by her present physical limitations. We both feel so proud of all our Kate has achieved so far. To have achieved so much, when in fact she is 'missing so much', with what we know to be such a malformation of her brain. We think of her as our little miracle girl, and have sure gained a new respect for the resilience and plasticity of the incredible human brain!

Katie continues to receive nothing but the best ongoing support and encouragement from her team of specialists, therapists, teachers and carers. She attends a truly supportive, inclusive, early childhood centre where she receives heaps of love and stimulation from her wonderful carers and the other children in her group. Although she seems to have developed her own "fan club" of children along the way, above all we strive for her to be accepted as just one of the kids. We know that at present Katie understands far more than she is able to show us she understands. All our efforts are focused on helping Katie make her own way through life as happily, as positively, as independently and as productively as she can.

Adaptive equipment and technology has fast become an important, almost indispensable part of our lives. Mobility and postural support is provided in the form of Katie specially designed wheelchair. A prone stander and AFO are helping Katie little body learn all about the world of ‘standing tall. Katie is learning to communicate through a bright new world of switches and communication devices.

Our dreams are modified dreams for now. Dreams of a little girl who may one day sit unsupported, creep, crawl, and stand .. and yes, even walk and talk. A little girl who may one day pick up and play with a favourite toy, a little girl who will giggle and laugh, a little girl who may one day say "I love you, too!" Acceptance can still be difficult at times. The heartbreak and sadness can be overwhelming and all consuming. However, through it all we have come to realise that we have been given a very special gift. The gift of Kate. A gift of joy and love. Katie is our life and our great love - the most pure, most unconditional love we have ever known. She continues to surprise and delight us every day. We think she is amazing!

Katie has opened up a new world for us. A brave new world of hope and courage, of inspiration and wonder, of hopes and dreams fulfilled, and above all, made us so thankful and appreciative of all we have. We feel so very fortunate in so many ways. We are certainly fortunate to feel the constant loving embrace of our families and friends who have been with us 'all the way', who have held our hands and laughed and cried, on both the good days and the very bad. We also feel fortunate to have the ongoing love and support of the many new friends we made along our journey. Our wonderful 'email friends' from all parts of the world - other parents, grandparents, teachers, carers those who also walk in our shoes.

We feel incredibly proud to be Katie parents. She has enriched our lives in ways that we will probably never fully appreciate, and possibly never truly realise. We know that we never truly understood the meaning of 'one day at a time' until Kate was born. We used to say it all the time, but now we know how it feels to 'live' it! One day at a time .... with love, hope and faith in all we do.

Katie continues to be our inspiration and the shining light in our lives. We love her so very much. We know that she is absolutely perfect in absolutely every way!

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.