Little Braveheart Fund

Our little miracle suffers from a rare disease called Small Brain Vessel Disease and due to this had a stroke inuetro which caused extensive damage to the brain. He suffers from CP, severe intractable epilepsy and Cortical Visual Impairment. He requires a huge amount of special therapy to try help him reach his inchstones and we are trying to raise funds to get him the therapy he so desperately needs. Our biggest goal at the moment is raising money to be able to afford stemcell therapy to help Hunter reach his milestones, to become more mobile, and hopefully stimulate his speech and vision. 

Hunter suffered a bleed on the brain inutero between 26 and 32 weeks of pregnancy. This was diagnosed at 36 weeks of pregnancy and further scans showed enlarged ventricles in the brain.

Hunter was born at 38 weeks and weighed 2.25kgs and immediately filled our life with an incomparable love and was a fighter from the start. 

At 3 months he was hospitalised with his first seizure. In hospital he suffered a further seizure which lasted close on 10 minutes and was immediately started on anti-epileptic medication. Since then he endured countless hospitalisations with life threatening apnoea episodes requiring CPR up to 17 times a day at home. He was also hospitalised on about 5 occasions with viral bronchiolitis.

An MRI at 3 weeks and a further MRI at 6 months showed extensive and global brain damage had been caused from the bleed on the brain.

At 6 months he was diagnosed with Cerebral Palsy as well as the devastating diagnosis of Infantile Spasms. Infantile Spasms (IS) is seen as a medical emergency and drugs were rushed in late the night this diagnosis was made. We were desperate to stop this catastrophic childhood epilepsy and started Viagabitron, oral cortisone (very high dose prednisilone), ACTH injections, vitamin therapy, numerous AEDs and other treatments were started in succession immediately. 15 different treatments, including the Ketogenic Diet, failed to stop IS and Hunter struggles with hundreds of seizures daily. Our fight with IS was long and we threw everything we could at it...fought harder than I ever dreamed possible but God had other plans...

The last EEG at 18months showed Infantile Spasms has now evolved into a different epilepsy phenotype and this is the natural course when IS is unable to be stopped and does not come with a good prognosis at all. His EEG shows a severe encephalopathy but his pattern is no longer one of hypsarrythmia. He continues to have many seizures daily but we are ecstatic the dreaded hypsarrhythmia is gone.

A developmental assesment at 16months showed that Hunter is developmentally at a level of between a 4 and 6 month old child.
Hunter is developmentally far behind but never gives up giving us an enormous amount of hope by his fighting spirit, incredible bravery and smiling through the toughest times and all the trauma and pain of multiple interventions and investigations. Our inspiration for our weakest moment and a blessing through it all. Hunter has taught me more in my 18 months with him than all I knew before and has touched more hearts in his short life than many do in a lifetime. A true HERO!

At 3 years old Hunter cannot sit, struggles to hold his head up on days, has weak tone in his trunk and neck, cannot sit, crawl or walk but is our everything and we rejoice at every inch-stone he does achieve. He spends most of the day sitting on the floor with assistance or in his mother's arms. Hunter has tought us about never taking anything for granted and to find joy in and celebrate the smallest step forward. We believe in the plasticity of the brain and in God's miracles. God has carried us out of the darkest depths and continues to bless and guide us every step of the way. We believe in faith, hope and above all else - LOVE.

We believe in doing our best to help Hunter reach his full potential through a number of different therapies: The Anat Baniel Method, stem cell therapy, hyperbaric oxygen therapy, and other alternative practitioners are a few on our list, some of which we have already started with and which have proven to be of great success for Hunter and others to be added soon and worked towards.  Hunter also requires a lot of special needs equipment to help him become more mobile and to help us to bathe, feed and keep him comfortable and for this too we have a wishlist that we are working towards purchasing.

Hunter has Cortical Visual Impairment rendering him almost completely blind. Physically his eyes are normal. He underwent bilateral cataract surgery in November 2014 had and lens implants at 17months. The operation was successful but it is still unclear at this point whether he can see but we pray that this develops soon. Clinically he does not respond to any visual stimuli except bright sunlight which causes him to close his eyes. This CVI is a big hurdle for Hunter due to the importance of developing through visually acquired skills but our hope remains strong and we believe Hunter will be blessed with sight in the near future. 

Hunter has spasticity in both arms and legs. He cannot use his left arm as well as the right although we have already seen good improvement in the spasticity here. Hunter has inspired many with his amazing spirit and bravery and has crept deep into the hearts of so many near and far. He is a blessed little boy and as it is said " it takes a village to raise these special children of ours" and with your help and through prayer we believe Hunter will fly high.

Visit Hunter's Facebook page for more pics and updates -
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Lisa van Dijk 
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