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Building up Reinforcements for Ryan

  • Check up and treatment adjustment

      1 June 2026

    Ryan had a follow up with his specialist at Waikato Hospital last week. He is following a strict ketogenic diet where he can only eat 2x a day, he has very strong will power not to deviate from what is allowed. It is obvious coming so close to death from seizures has strengthened Ryans mind so he really has the will power to keep at it.

    He's still getting used to going to hospital every 4 weeks for 2 days of infusions but these along with the ketogenic diet have greatly decreased seizure burden.

    His specialist is changing the infusions to 3 weekly, the goal is to try to ensure immunoglobulin levels stay higher in his body to prevent the clusters of seizures he has at week 5 when they've worn off. It takes about a week for levels to rise so the treatment window is getting tweaked. Ryan has gained weight & strength. He isnt attending school regularly but has been in socially to be around students & things are being put in place to try and help him attend his school ball. Having battled refractory epilepsy since age 12 Ryan has missed out on so much which has caused social isolation while peers around him gain further independence. We would love to see more opportunities for him to meet people and be included in things as people have been scared of his seizures. Thank you to everyone who donates blood because it is the donor immunoglobulins providing treatment to Ryan every 3 weeks to correct his immune system problems which lead to seizures which dont respond to medications.

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  • Building bone strength

      7 May 2026
    Main image

    Hi Everyone,

    Ryan has been back to hospital for his 4 weekly infusions.

    This dumbell set (pictured) will be purchased for Ryan to help gain strength and prevent osteoporosis. He has low vitamin D and being on long term older epileptic drugs like one he is on can cause bones to break down.

    Exercises using resistance will help protect his bones.

    As always we appreciate any support and all prayers.

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  • Keep going....

      28 April 2026

    Thank you for continued support, messages, prayers and donations for Ryan.

    Ryan is at home daily unable to attend school and cared for by his mother. He is under the care of a metabolic neurologist. He has to go to hospital every 4 weeks for 2 days of IVIG and steroid infusions.

    He is on a very limited and strict ketogenic diet which is very costly and time consuming to prepare. Ryan is extremely committed to the diet and amazes his family how he never consumes anything he shouldn't nor asks for anything off the plan. This shows how desperately he wants to stop his seizures.Ryan has gained weight on the ketogenic diet and seizures have lessened quite a lot.

    After his infusions each month he sometimes has an exacerbation of seizures which is very frightening. As ryans seizures are autonomic its critical he avoid stress, sleep deprivation and remains well hydrated. He is currently borrowing a seizure monitor which the family are going to purchase.

    Plans are being made to take Ryan back to brisbane for ivasive surgical testing to try and find seizure cause. Kelly is by his side every day.

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  • The fighters

      27 April 2026

    Life has been extremely hard this year since almost loosing Ryan & with him still having seizures at times especially at night.

    Ryan goes to hospital every 4 weeks for 2 days of ivig infusions & steroids. Sadly after the last lot he suffered an increase in nocturnal seizures.

    Ryan is home every day. He is on a strict ketogenic diet directed by a neurologist.

    It is costing so much & its tough. $9 for a small bag of nuts & steak.

    Its hard cooking 2 meals & the family miss Ryan being able to share in the same meals as them. But he is extremely resilient & eats exactly what the recipe states & never falters nor asks for anything hes not allowed. He has the most incredible self control his mum has ever known. It shows how desperately ryan wants to stop his seizures.

    Ryan has put on weight & his sleep has greatly improved. They have to be very careful not to stress ryan, give him a fright or let him get tired as they are seizure triggers.

    Kelly is struggling to come to terms with & accept Ryans condition. There is no escape.

    Drs overseas are running genetic tests to find out if its disease causing.

    Brisbane Hospital are trying to get Ryan there for operational testing. But they gave Ryan meds which caused him to deteriorate & end up in a coma.

    We are grateful he's alive and will keep supporting him through this.

    The family is super grateful for friends and family who really get it and really care about Ryan. Thank you for the support financially, in person and in prayer.

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  • The journey still continues........

      18 February 2026

    Praise God, Ryan is back home in Rotorua with his family.

    There is still a long way to go with recovery.

    Kelly is off work helping Ryan rebuild strength and confidence. He is having infusions in hospital for 2 days, every 4 weeks. He has gone on a strict medically guided Keto diet which is expensive, time consuming and hard going for Ryan.

    Night times are long with focal seizures and the family is not getting much sleep.

    Ryan is awaiting a further trip to Brisbane hospital for surgical brain testing.

    The family are grateful for funds for all these ongoing costs and treatment follow up. They are especially grateful Ryan is alive, as hard as it is supporting him with his debilitating epilepsy disorder.

    Every prayer and dollar helps the family support Ryan. Thank you for continuing to follow the journey.

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  • Extremely hard times......

      24 January 2026

    Ryan was put back into a coma for the third time at 2am friday morning due to the inability to stop seizures. He remains this way while Dr's wait to see if the immunotherapy can take effect.

    These last few weeks have been very hard on Ryans parents and siblings who are traveling back and forth to Rotorua. Due to this Kelly and Trevor are not able to work. Kelly will have to give up her role as a nurse to care for Ryan now and throughout his recovery.

    Your donations are helping keep the family afloat. All messages of support are being read by the family and continue to bring comfort.

    Please share this page wherever you can.

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  • From Kelly

      22 January 2026

    Ryan is still in ICU Waikato. He has been here 2 weeks now. Seizures still when falling asleep which is hard to see. Drs are doing all they can to help him. Thank you for donations and kind words. Ryan can't get a job or drive a car or go out much so it all helps with his care and to give ryan more opportunities. The messages of support are being read and are comforting.

    Thank you all.

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  • Possible diagnosis....

      18 January 2026

    Hi Support Crew.

    It appears Ryan may have a rare autoimmune epilepsy. Drugs make it worse and thats what Ryan has experienced. Its been 5 years of much pain and anguish as hes continued to suffer. Autoimmune epilepsy is not cure able but any funds Ryan is given can help make his life better.

    Thank you kindly for your prayers, thoughts and generosity.

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