I recently reached out to Lisa, little Hunter’s mom, and asked her if I could please share their story. I have been following this brave little boy’s life on Facebook since the beginning of the year… I have cried for them with every setback and leaped with joy at every triumph. See, Hunter is a very special little boy – not only is he strikingly beautiful, but he also suffers from Cerebral Palsy, severe Intractable Epilepsy and Cortical Visual Impairment after damage to the brain was picked up In Utero… he is only 18 months old.
I admire his parents, they have remained positive throughout Hunters’ diagnosis and continue to do so every day – reading the updates on the Facebook page you can see for yourself, they are taking this head on! I have asked Lisa to tell us her story, to tell us what it is really like raising a child with Cerebral Palsy, Severe Intractable Epilepsy And Cortical Visual Impairment. This is their story as told by Lisa, his brave mom, a true inspiration…
Our story begins when we first found out about Hunter’s bleed on the brain when I was still pregnant. At 32 weeks our gynae saw something on his brain in a routine ultrasound and we were immediately sent for a further 4D scan – we had been for an earlier 4D scan prior to this but everything was still perfect at that point… we were shattered by this news and did not know what to expect, we just kept praying for a false alarm but somehow the decrease in movement in the few weeks leading up to the scan made me incredibly anxious. The scan revealed enlarged ventricles and a bleed on the brain in a few areas. This could not be explained by any expert and the cause remains unknown, but we remained hopeful as other than the enlarged ventricles the rest of brain seemed to look fine. We were told that it is difficult to make any definite conclusions as ultrasound is not able do view areas deep in the brain.
We did the only thing we could do…we prepared ourselves for the birth praying for a miracle. The areas in the brain that we were told could not conclusively be said to be fine were areas to do with breathing, vision, hearing and motor control. We were worried that Hunter would not be able to breathe on his own or not have use of one of his limbs, we worried about the difficulty life would bring if he was blind or deaf and how he would struggle. Like any parent we wanted the world for our unborn child, we wanted him perfect. Just before his birth we were warned that sometimes “these babies” can come out looking odd and malformed. We really were preparing ourselves in a way for the worst but never gave up believing that it would all be okay in the end.. it was in God’s hands.
I remember lying there on the operating table flooded with emotions and waiting for the doctors to deliver Hunter… I was so incredibly excited to meet him, feeling so blessed to be experience the miracle of life once again, so impatient to have him in my arms – to hold and cuddle him, to feel his soft skin. At the same time I was more nervous than I’d ever been not knowing what to expect and so anxious for him to be okay and to make it into this world. The doctor made his cut and before they were ready to take our little miracle out a teensy tiny hand reached out of the womb and grabbed one of the doctor’s surgical instruments – the theatre filled with laughter and surprise.. how utterly amazing, what a curious little soul – full of surprises! It was in this moment that I knew you would be just fine. Our boy was born and I still remember the doctor taking him out, hearing the pediatrician say he is perfect and putting him in my arms…He truly was perfect and so beautiful
. He was breathing, he had all his limbs and every toe and finger was there. He had perfect Apgar
scores and it was a miracle! He even made his own way up to my breast, wriggling up my body and blew us away drinking within minutes of being born. It was bliss after all the stress and we loved our new baby with an incomparable love. The next day we were told to take our baby boy home and treat him as normal and this is exactly what we did.
Things seemed to be going relatively well. Hunter did not make much eye contact in the first few months (I told myself my first born did everything way too early and it would come),
he screamed and moaned non-stop and always needed to be in my arms or attached to my breast 24/7 (quite literally)
for 3 months. This was put down to colic and reflux by the doctors but turned out to be neuro irritability
and possibly seizures. Hunter had an MRI at 3 weeks old which showed severe brain damage in multiple areas and the doctors painted a sad and dishearting picture of Hunters future. We held on to hope, faith in a miracle and the belief in the plasticity of the brain. I somehow did not allow myself to believe anything was really wrong with my perfect angel. Our belief that somehow Hunter would beat this was what kept us going and something we have not stopped believing in until this day. We were going to do everything possible to help this little angel and amazing miracle beat all the odds.
At 3 months old Hunter woke up without crying or screaming for the first time ever. He was not crying non-stop and for the first time I could put him down without him immediately crying to be picked up again… I immediately knew something was wrong, but tried to tell myself to just wait – maybe, just maybe we had reached a turning point. It was only an hour before I decided to take him to the doctor, by then he was a little ‘floppy’ and I just knew something must be terribly wrong. We got to the hospital and he almost immediately had a seizure – it lasted over 10 minutes… That was the longest 10 minutes of my life. I remember watching the nurses try help him and frantically rush around trying to stop the seizure – he lay there jerking, twitching, not breathing properly, and completely out of it.. I stood beside him at the foot of the bed watching this nightmare in slow motion, helplessly shaking and softly crying – praying to God to help us. The seizure stopped, but Hunter had to be started on Anti-Epileptic medication. Thank goodness we had been in hospital for this nightmare…thank heavens for mother’s intuition! Epilepsy
was then added to Hunter’s diagnosis of severe brain damage and we had to learn how to manage seizures which were never really controlled by medication and it was always up and down from here on. We dealt with many life threatening apnoea
and multiple hospital visits. We started feeling at home in hospital and became a real part of the hospital family. Walking through our hospital to this day makes me feel like I’m carrying a celebrity – everyone there knows and loves Hunter.
At 6 months old Hunter’s Epilepsy got worse and he was also diagnosed with Cerebral Palsy
and Infantile Spasms
. Infantile Spasms
is a catastrophic childhood epilepsy with devastating consequences. It is seen as a medical emergency and additional medication was rushed in late on the night of diagnosis – we were desperate to stop this Infantile Spasms
as soon as possible before it did further damage to his brain. Nothing we did and no amount of medication we added could stop this awful thing. We tried 15 different medications as well as the Ketogenic Diet
. We fought a very long and hard fight and did everything we could. Our lives turned into accepting when we realized it would probably not be stopped by medication and we adapted to living and dealing with Infantile Spasms
‘s consequences on a daily basis, all the while searching high and low for a cure in every avenue. Despite this, 12 months down the line Hunter was 18 months old and still had IS. Finally an EEG
at 18.5 months revealed Infantile Spasms was now progressing into a different epilepsy phenotype which is the natural course of IS. At last we were rid of the dreaded epilepsy type but his EEG pattern remained encephalopathic (very slow)
and doctors did not have a good outlook for Hunters future and IS for this length of time does not come with a good prognosis.
Because of all this history, Hunter is developmentally far behind but he never gives up and fights like a real warrior. This gives us so much hope – he has an incredible fighting spirit and unrelenting bravery, always smiling through the toughest times and all the trauma and pain of multiple interventions and investigations. He has had uncountable hospitalizations – many for life threatening seizures but he has always made it through like a shining star stealing our hearts over and over again. He is our inspiration in our weakest moments 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 what many achieve in a lifetime. He is A true HERO!
At 18 months Hunter cannot sit but is getting there and he now manages to sit for a few minutes before losing balance. He has weak tone in his trunk and neck, severe spasticity and hypertone in his legs and arms, and at times manages to roll over with a bit of help. He cannot crawl or walk, but he is our everything.
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.
We have been through a huge amount of hardship and have been pushed to limits I never dreamed of or could ever have imagined existed. I have gone from a person who lived life to the fullest and loved every minute of it to someone who has to make the most of being stuck at home… just soldiering on, fighting the urge to throw in the towel – to give up and give in to my anger of how unfair this all is. I have become obsessed with trying to find a cure, a diagnosis, an explanation, a way to help him. Praying to God and waiting and believing with all my heart in a miracle. There are days were I believe he will be healed and I stand him up and wait for him to take a step – waiting for a sign that he has been healed. But this day has not yet come for Hunter and God has other plans… more for us and others to learn through all of this, a different plan..one I have to believe is better for us no matter how difficult that is. So soldiering on through the hours of selflessly attending to Hunter’s many needs and keeping him happy and comfortable every minute of the day is what I do. I do this by carrying him in my arms almost the entire day with quick 10 min breaks to keep my sanity. I rock him to sleep for hours..often for a mere 10 min nap – but sleep is important to prevent further seizures so this is a must. He is heavy, difficult to hold due to low tone (not holding himself up) and rigidity in other places. My body aches – in places i didn’t know could ache, ache on a new level. Every night I go to bed thinking I can’t anymore but every morning I find the strength from somewhere to carry on. I love being a mother and I do this because it makes Hunter happy – he loves to be involved in everyday activity. Sitting on his own is not an option – it is scary for him, uncomfortable, painful and ultimately boring as he cannot see nor can he interact with the world around him due to his physical disability.
He loves life but needs my help to experience every bit of it. He also has sensory integration issues and like a newborn the movement of being in my arms calms him. He experiences a lot of pain and leg cramps due to muscle spasticity and this adds to his irritability and his need for being soothed by rocking. I still have to figure out a way of having him be calm and stimulated for at least short periods by himself but neuro irritability
and hundreds of seizures a day plus CVI (he is virtually blind)
, and severe Cerebral Palsy
makes this extremely difficult. He is not comfortable in a pram and his special needs buggy is not his favourite – he has spent a maximum of 5 minutes at a time in this. He ultimately just wants mommy and that is what makes him happy – so for now I give in… how can I not when I see how easily this makes all his discomfort and fear melt away, how well he interacts and the joy he can experience with my help? I will carry on until I cannot anymore but am looking for ways to improve his life and through this ours by therapies and surgeries – mainly SPML surgery (this surgery should be a complete game changer – make him suffer less pain in his legs from spasticity, be more comfortable, avoid future hip surgery due to hip dislocation, sit better and help him become mobile)
and ABM – a therapy
that has helped many children like him reach their inchstones
and one that has proven to be amazing for Hunter’s progress. Both of the above and all of Hunter’s special needs, care and equipment comes at an unfairly high cost. Everything necessary to help him reach another inchstone is so unbelievably expensive. We are relatively financially sound, but there is simply no way we can afford this new lifestyle we find ourselves in.
Our day is filled with me carrying Hunter, feeding him usually standing up and rocking with one arm whilst feeding with the other, rocking in between to keep him calm and struggling to get each mouthful in before my body says “thats it..i cant!”..the muscles in my arm tearing, splitting and screaming for mercy. The rest of the day is filled with constant bits of therapy that I do myself with Hunter, helping him sit, encouraging and lifting his arms to play and explore toys and objects, trying and begging his eyes and brain to see using different tools and methods and creativity, helping him stand, encouraging play between my two boys, soothing his pain and crying or niggling, potty training, bathing, dealing with a demanding and very bright and inquisitive, at times difficult, very busy older brother, running the household (just a little), making time for hubby (we had our first 1 hour night out alone in over 2 years a few months ago), and most of all making my boys smile and laugh. Hunter’s laugh is one of my favourite things..It has a way of melting away all my worries and seeing him happy makes it all more than worth it. With him in my arms I can take on the world. He is like a magic charm that gives me super human strength but also ironically my peace through this whole storm. His arms around my neck and his body snuggled in my arms – this is my world, he keeps me calm, his love makes me feel I can face it all.
We see a physiotherapist weekly, have Occupational therapy and Speech therapy appointments and most weeks we see at least a homeopath, pediatrician, chiropractor, neurologist, eye specialist or some sort of medical practitioner. These appointments are usually my time to get out and I quite look forward to them. as sad as that may sound. Some days are spent with the main focus being keeping Hunter alive. These are the days were Hunter has up to 20 apneic seizures in a day and requires mouth to mouth, CPR and oxygen to keep him breathing, anti epileptic loading doses and rescue meds to keep his brain safe from seizures. These are the difficult, hellish days that I try not to think about and that can truly break your spirit. Nothing is worse than watching your child have a seizure and suffer. Nothing scares me more than the prospect of a seizure I cannot stop. These are days where you can do nothing more at the end of the day but leave it in Gods hands and you know what? God has sent me a rainbow each and every time, quite literally sometimes and everything has always been okay. How blessed we are!
In between dealing with Hunters many needs, I try make time for my eldest son Ty. He is incredible, a true miracle and genius child. He is the most amazing and perfect gift from God. A child whom I want to give everything to, but end up having so little time for. I am able to keep him happy with Grannies, nanny, playdates, school and family members – but he is a boy who needs his mom like any other. Hunter’s needs are simply not this easily met and he is calm only in my arms. I do believe I give Ty my best, but I want so much more for him. I dream to be a part of every detail of Ty’s life and feel I miss out on almost everything, but for now this is the way things have to be. This is a part of the story that is almost too painful for me to get into any further. This too is a driving force to get Hunter all the help he can get. For all of us, but especially Ty and very obviously Hunter himself.
The love of a parent can help move mountains, but we have reached a point of either accepting and in a sense ‘giving up’ and settling for medicating Hunter to be more comfortable – pretty much keeping him drugged to be ‘happy’ or the alternative – our choice fighting and giving it our all. We know Hunter is capable and deserves so much more. He has shown us his sheer determination, his fighting spirit, zest for life and bravery time and time again. This however is a pace no one can keep up with. We choose to make the choice to give it our absolute all… to reach out and find help through fundraising and do everything in our power to make Hunter’s life easier. SPML and ABM is the answer. That and a miracle – we never give up believing this is possible. God hears our prayers and when the time is right all will be okay. Whichever way that is and whatever Gods plan may be, our Faith carries us through it all.. that, hope and love. Whichever one is absent at whatever time gets filled by one of the others or a balance of the 3. This becomes our winning solution. We have big dreams for our future with Hunter, these dreams keep us going… we dream to see him walk, see and enjoy and experience life fully.
When we first found out about the bleed on our babies brain during my pregnancy, we never could have imagined what lay ahead and everything we have been through. I believe we never fully allowed ourselves to think about the devastating prognosis of it all, but in hindsight this was our saving grace, it was what got us through. We blindly believed we could conquer it all. We became a strong and powerful team and remained confident everything would be okay and somehow it is and will continue to be so. Somehow it is more than okay.. the love we have for Hunter is immeasurable and exceeds what I thought my heart was capable of. What we have learnt is explainable, the little things you learn to appreciate – too beautiful! The blessing of life incomparable..The bond and faith with God irreplaceable. Hunter is and will always be our perfect angel and him and Ty our biggest blessing.
Our day is filled with a range of emotions swinging from anger, despair, frustration, grief and sadness but the emotions of joy at seeing him achieve his inchstones and of our love for Hunter and more importantly his love for life and for all of us trumps all the negative. Our Little Braveheart is a warrior and one who will conquer it all in his own way.
I personally cannot even begin to imagine what Lisa and her family is going through, all I know is that I want to help – in any way possible. Like Lisa mentioned, all the medication, surgeries, equipment, etc. are extremely costly – and although I know that it is not easy in this economic climate, I would like to ask you to open up your hearts and wallets – every little bit can help this amazing family – whether it is R20, R200 or R2000… Or even just a message of support and encouragent. I just know that it would be greatly appreciated. Their biggest goal at the moment is raising money to be able to afford SPML surgery which is only offered in USA. This surgery costs R200 000 and after adding flights and accommodation… well, as you can imagine it is quite a substantial figure. It will all be worth it, maybe after undergoing the surgery Hunter will be able to one day walk.
Hunter has inspired many with his amazing spirit and bravery and he has crept deep into the heart of so many near and far. We are all rooting for this brave little boy.
I will be selling advertising space on the blog at R500 an advert per month starting 1 May 2015, 50% will go towards Hunters’ surgery. Please fill out the Contact Me form for more info or to request a Media Kit.
Account Name: Lisa Hohls
Account Number: 623 113 42670
Branch Code: 250655
FNB – Cheque Account
Account Name: Lisa Van Dijk
Contact Details: firstname.lastname@example.org
You can follow little Hunter’s progress on the Facebook Page.