Kira from New York
Kira was born in January 2017, slightly jaundiced, but otherwise a happy, healthy baby. She grew very quickly, going to the 90th centiles for height and weight within 6 months!
Life with Kira was generally the same as most other kids until she got an ear infection the summer of 2021, aged 4.5yrs. Although places were still locked down with Covid, Kira was still attending nursery (Dad was classed as an essential worker so it was permitted for her to go).
She came home on a Thursday with a sore ear, feeling under the weather, then started being sick that night. She seemed to perk up on the Saturday/Sunday but then went downhill again on the Monday. She couldn’t keep anything down and was getting very lethargic. We spoke to our GP who recommended we bring her in the next day to be seen in person. Following some checks at the appointment on Tuesday the GP sent us straight to the CAT ward at the local hospital as Kira was dehydrated and her heart rate was a little low.
Me and my husband were both allowed to stay with Kira for a couple of hours while
she was checked and admitted, but only one was allowed to stay the night with her due to Covid. I stayed with her that night and she seemed OK once she had an IV in, except she couldn’t stop being sick every hour, even with anti-sickness medicines.
At around 10am on Wednesday, Kira had her 1st seizure in front of me and a student nurse who was changing some of her bandages on her IV. Kira was asleep at the time. The nurse went to get a doctor as my husband arrived, which is when Kira had her 2nd seizure whilst the doctor examined her. The doctor called for a crash team after noticing her pupils were mis-matched and unresponsive. What happened next is mostly a blur, but I’ve watched enough medical dramas to know what was happening to my baby girl. For a short time, we were huddled in the corner of the room watching various medical personnel attend to Kira and then were moved to a staff room to allow the doctors to work. We have never been so scared in our lives.
It was very lucky we were already at the hospital. Within around 10-15 minutes (that felt like hours), Kira was conscious and talking, completely oblivious as to what had just happened. She was taken away for testing as they were naturally very concerned about what had happened to an otherwise healthy child. We sat in this suddenly very empty room, shell shocked, made some calls to family to let them know.
We were taken to ICU to see Kira a few hours later, she was being kept asleep following a CT scan. The doctors informed us that she had a very large blood clot in her brain that had caused a stroke. They needed to operate immediately to relieve the pressure and remove damaged sections of her brain. I signed some forms; we kissed her and then she went off to surgery. The staff put us up in a family room so we could stay at the hospital rather than having to travel back and forth.
We were warned that the location of the clot and damage may result in Kira being unable to talk properly and could affect movement in parts of her body. No-one would know until she woke from surgery and could be properly assessed.
At 5.45pm we got a call from her surgeon to say he had finished and everything looked a lot better than it had on the scans. It would be a couple more hours before she would be out and ready for us to visit. Unfortunately, we had fallen asleep when she came out of surgery (due to stress and fatigue) and woke to voicemails from the ICU staff telling us we could go see her. When we arrived, they were just bringing her round and removing the tube from her throat. Kira immediately asked for a drink of water - full sentence, very clearly. The staff were shocked at how clear she had spoken considering what had happened to her and so soon after surgery. She was also moving her hands and trying to push the staff away from her as she wanted to be left alone to sleep.
The relief was profound! But we also didn’t want to get our hopes up completely as we’d been told that recovery could be months to years. We were also informed at this point it wasn’t one clot, but dozens of smaller ones that had become clumped together, but the hospital had no idea what caused it at the time.
As covid was still a factor at the time, my husband and I were not allowed to be in the hospital with Kira at the same time. We took it in turns spending 2-3 days with her, then swapping over so the other one could also spend 2-3 days with her.
Kira decided she was going to defy the odds (may have something to do with my husband promising to get her a big toy once she was well enough to leave the hospital). She was moving her arms and legs and talking within days (and to be fair may have done sooner but the amount of morphine she was on to begin with made her very drowsy). She was feeding herself within a week post op – with the smuggest grin on her face you have ever seen, especially around medical staff! At 7-10 days she was demanding we wheel her around the ward to see the staff as she was bored being stuck in the room watching Paw Patrol. PT and OT had signed her off within 2 sessions as she could walk unaided and was beating them at giant connect four. She did get tired very quickly, which was natural and expected. At 2 weeks they were talking about sending us home for a short time as Kira was so healthy!
It was closer to 3 weeks when we took her home for the weekend – it felt like
a dream! To be at home, the 3 of us together. We didn’t do much other than rest, which we all needed, but it was amazing.
When we went back in after the weekend for some routine check-ups, we had another shock, we were told we’d be staying. As Kira had recovered so well, they wanted to do a 2nd surgery to put the piece of skull they had removed back where it belonged. Up until then it had been kept under her skin, near to her stomach. We were told this was the best place for it as it would keep the bone pieces ‘alive’ for a couple of months. So 2nd surgery, out of the blue. This went well but there were some complications in a day or two afterwards, so she did have to have a third surgery to correct these, but once that was done, she recovered very quickly again.
We got to the 4-week mark when they told us they had found a reason for it all - Classic Homocystinuria. We had never heard of it, even though it was tested at the newborn screening. (Kira tested negative at birth).
We left the hospital 4.5 weeks post op with a month’s supply of Betaine, a prescription for Aspirin and Folic Acid, a referral for a wheelchair and a referral for the metabolic clinic.
Unfortunately for Kira, Betaine didn’t work and she needed to go on to Anamix Junior and a low protein diet. Going from a high protein diet to 10 exchanges a day was a big shock for us all! Luckily Kira isn’t a very picky eater and managed very well though the supplements were a harder thing to sort. She’s amazing though and generally her levels are great with only the odd spike here and there (usually due to her growing).
We are very fortunate that we have amazing staff at the metabolic clinic who would happily answer our questions, offer advice, sort trials of prescription foods, and work with the GP to get them sorted. We also found the HCU and PKU communities online which also provided comfort – knowing there were others who were living with the condition helped.
Kira missed the start of Primary School as a result of this but was eager to start back and only missed about 4 weeks. The initial couple of weeks she had shorter days to ease her into it, but she fully settled in with ease and soon made friends and got on very well with everyone there. The staff have been amazing at helping us manage her diet and she had school meals with her classmates until year 3, with the school kitchen staff working with us directly to provide a variety of food that Kira could have. Kira has since decided she wanted packed lunches, like most of her friends.
We’ve had plenty of challenges along the way, but Kira won’t be stopped by it. She does occasionally ask, ‘why me’, ‘why can’t I be the same as others’ and there have been some tough questions to answer. We remind her, we are all different. Some of her friends can’t eat dairy, some have asthma, some have diabetes. Plus, myself and my husband also have dietary intolerances too which Kira is aware of.
She is a bit unique though – when genetic testing was done, only one marker was found that she shares with me. Her Dad doesn’t have any markers. Technically, Kira should not have HCU, but she does. The Doctors have said they will do new genetic tests at the 10-year mark to see what advancements in genetic testing find.
Kira knows the protein amounts of many different foods by heart, works out herself what she wants to use her exchanges on each day, and has a varied and healthy diet compared to most other kids we know. She loves Broccoli, Sausages, and Yorkshire Puddings.
Kira loves school and learning, always participating in the lessons, and helping other children. All the staff think she is amazing and so many kids and adults know her. She also attends an after-school club with kids of varying ages from schools around the area and is very well known to them. She loves helping to look after the much younger kids there.
She’s a happy, healthy, (very tall) 9.5yr old who loves K-Pop Demon Hunters! This year a poem she wrote was published in a book with other children from around the country (the book can be found in the British Library). We are beyond proud of Kira. She has met every challenge head on and keeps pushing herself, testing her limits and surpassing them with determination.
Published October 2026
