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Baby Coen Wylie

  • Trying to manage at home

      26 October 2018

    Just an update of life at home. It's great to have a little more normality than life in the hospital. Coen is still have 15-20 seizures per day and it's hard to hear him screaming as in pain with them. We are still desperate for any help we can get that Coen needs. Coen is not mobile and we have done well the last couple of weeks with no feeding tube but unfortunately he is losing weight. We have our follow up appointment at Starship next week.

    Good news is that we have managed to get 21 hours support per week for Helen and Coen as Brett has had to go back to work where he can.

    Life is still not easy or normal but we are adjusting the best we can.

    Coen brings us so much joy and he receives so much love from everyone, such a beautiful boy.

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  • One week home

      29 September 2018

    We left hospital a week ago and are now living with Alan and Sally (Brettms parents).

    It has been great to be out of hospital, feel some sun on our white bodies, have a walk on the beach and have a little normality where we can in our lives.

    Unfortunately, Coen is still having multiple seizures a day. There doesn’t seem to be a pattern and it’s still extremely tiring for all of us. We grab sleep whenever we can.

    Help and support from agencies has been difficult as the journey ahead doesn't look easy. We have asked for urgent help from overseas to see if anyone else can help us.

    Coen is a gorgeous little boy who everyone loves and wants the best outcome for.

    This journey certainly tests everyone and all support is much appreciated.

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  • Farewell to Starship

      20 September 2018

    On Tuesday morning Coen left Starship by ambulance to Tauranga Hospital.

    We would all like to say a huge thank to all the staff, nurses and neuro specialists at Starship. Dr Rakesh Patel in particular, has been amazing. So supportive and has stood by our side through this difficult journey. Everyone loved Coen and the beautiful card from the staff expressed their love and sneaky cuddles in the night. So a big thank to the Starship team and they are thoroughly recommend.

    We made some lovely friends and families that were also long term patients.

    Coen is currently in Tauranga Hospital so they can get to know him and assist with whatever medical needs he has in the future.

    Brett and Helen plan to take Coen home tomorrow with all the necessities to support him at home. Will keep you updated.

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  • CBD oil

      15 September 2018
    Main image

    Brett and Helen have decided to try Coen on CBD oil to see if it helps him at all.

    He started on .2ml, twice daily last Friday (07/09). He has been averaging 10 longer seizures per 24 hours for the past few days which is considerably less than the previous days/months.

    His dose is being upped daily and 25ml is around $550nz as CBD oil isn’t government funded. I just wanted to give people an indication of the cost so they know where money is being spent. 25ml will last approximately 14 days but as Coen grows he will need higher doses and in turn, the medication costs will rise.

    Thank you all so much for your constant love and support for Brett, Helen and Coen.

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  • Coen’s Journey Continues

      8 September 2018

    This week has been devastating for everyone.

    The results from the EEG have shown activity on both sides of the brain and so they cannot do anything more or any further surgery. The doctors are stumped and have no answers. They have started on the cannabis oil as a trial to see if this will help reduce seizures.

    Brett and Helen are planning to transition to Tauranga over the next week or two, where they will spend a week in Tauranga Hospital then go home to Alan and Sally's. It will still be a hard journey ahead trying to manage Coen at home and give them all some normality.

    The palliative care team and it’s support will be much needed out ahead.

    It has been a difficult journey and a roller coaster ride for everyone.

    Thank you for your on going support.

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  • Extending page life

      4 September 2018

    Hi everyone

    As Baby Coen is still in hospital and I've decided to extend the length of time this page can collect donations.

    This is due to Brett and Helen still being unable to work and needing to be by Coen's side while doctors search for answers.

    Thank you all so much for your generosity throughout this time. Brett and Helen are overwhelmed by the help they've had from everyone.

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  • No answers and big scars

      1 September 2018

    Still difficult times with Baby Coen. He is one very brave boy. The operation has not worked with seizures still continuing with between 30-40 per day although shorter. Coen had another EEG last week and waiting for results this coming week. The tissue they removed from the operation has come back fine. So we still have no answers or any idea of the future out ahead. Brett and Helen have been amazing although extremely tough times, sheer frustration and immense sadness.

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  • Surgery Update

      21 August 2018

    Coens had surgery yesterday about a 10 hour operation. A long day for everyone . He had a temporal occipital parietal disconnection. The surgeon said the next little while will tell as he is still having seizures although a lot shorter. Will do another MRI and EEG. If continues will need further surgery to have full disconnection sooner than later. He is in PICU for two nights then will move into HDU. So still a long road ahead for poor Coen. Brett and Helen were hoping for no seizures so was the surgeon. Hopefully things will settle soon

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  • Waiting for surgery

      16 August 2018

    Give a little

    Coen is having his hemispherectomy surgery on Monday. This cannot come soon enough as his seizures are now getting longer and he's exhausted from them .

    Today Coen is having a stealth scan

    (more 3D imaging) to assist with the operation. This will be a very complex operation and the doctors have said to be prepared for a rocky road out ahead.

    Brett and Helen have been such amazing parents throughout the last 5 months in Starship, they deserve a medal!

    Our thoughts and prayers will be with them next week through this tough ordeal.

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  • Surgery postponed

      1 August 2018

    We were devastated to hear late yesterday, that they are not operating on Coen tomorrow. The doctors told us today that the whole team needs more time to plan this operation as very complex and definitely not straight forward. It may involve a bigger operation at the time so careful planning is required before hand.

    It is very hard on Brett and Helen waiting, unable to leave the hospital, watching the numerous seizures and wanting the very best for their little one. Will keep everyone updated.

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  • Update for Baby Coen

      30 July 2018

    A family meeting was held on Friday to discuss options out ahead for Coen. Unfortunately he cannot continue as he is with still having about 20 seizures per day. No medications are working and Keto diet didn't work, in fact it made him worse. If this continues he will not develop or survive.

    So we discussed surgery options having a hemispherectomy. This will initially be a partial resection of the brain behind his motor skill area or a disconnection of the hemispheres. A major operation which has some very promising outcomes for the future. This is planned for this Thursday . We would appreciate your thoughts and prayers for the doctors and strength for Brett and Helen during this very difficult time. Four and a half months in hospital is certainly taking its toll.

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  • A bump in the road

      11 July 2018

    Hi everyone, Coen had his SPECT scan yesterday and we came out with a mixed bag of results so it’s not conclusive at this stage.

    He will have an IPE (blood infusion) on Friday, another MRI next week, and the following week the epileptic surgeons and radiology specialists will consult as to what surgery options or outcomes may be still ahead. It’s a very difficult and frustrating time for everyone along with more time in hospital until we hopefully have some answers and solutions.

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  • So many thank you’s

      25 June 2018

    Just a quick message to say thank you to each and every one of you for contributing to helping Brett, Helen and our darling Coen. It means so much to us all and we appreciate it so so much x J

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