We lost our beautiful daughter Seren on the 20th of December 2017 after a brief stay at Addenbrooke's Paediatric Intensive Care Unit. She was 12 weeks and 5 days old.
After a previous stint in hospital when she was 7 weeks old, we were waiting on a diagnosis for Seren. We knew she had a mitochondria disorder, we knew she had abnormalities in her brain matter, we didn't know when that meant for Seren.
On the 19th of December, we got a diagnosis, after this, we had 24 hours left with our little girl. Her body was already shutting down.
We were only at Acorn House, provided by The Sick Children's Trust for 2 nights, but those 2 nights meant we were comfortable and felt safe with no financial worries. We were able to get food in to cook and eat normal meals, sleep comfortably, have a hot shower & have a direct telephone line with Seren's nurse.
We thought we'd be there for the long haul. We'd planned a list of food, clothes and essentials for our parents to bring up there for us, all the facilities we needed were there, all within a 5 minute walk of Seren's hospital bed. They were invaluable.
The Sick Children's trust rely on charity donations to keep their houses running. It costs £30 to provide a room for a family for a night. We'd like to now raise £11000 through our fundraising activities, which would cover the cost of a family room for 1 year.
We completed a 7 mile sponsored walk from Walton Pier to Clacton Pier on the 13th of May.
14 riders are in training for a 320 miles bike ride from Aberystwyth Pier to Clacton Pier then on to Great Bentley, Seren's home over 4 days from 29th of August - 1st of September via Acorn House.
We are also organising a sponsored walk in Aberystwyth for 29th of July.
Many of Seren's friends & family will be joining us & we all have one aim, to raise as much money possible for The Sick Children's Trust.
Please help to support us support other families. Charities and houses like this are invaluable for families like us at their hardest times.
Love Katie & Ian xxx

For those of you who wish to know more about Seren:
Seren Bessie Picken was born 22nd of September 2017 at 2.57am at Colchester Hospital. Seren was checked over by the midwives- they said she was perfect. Something we already knew. Seren was 6lb 2oz & absolutely beautiful.
Once we were home, we started life as a family of 3. Seren was no different to any other new born baby. Life was perfect.
After Seren’s 6 week doctors check, Seren started showing some odd behaviour. Her cries changed to, what was described as grunting. Her movements would become jerky & body quite stiff. These ‘episodes’ as we soon called them lasted seconds, then minutes & after the check up, 20 minutes.
When Seren was 7 weeks old she had one of these episodes. We have been to town for a coffee and shopping. This episode lasted 3 hours. We tried everything to calm her but nothing worked. We took her to see our GP, he checked her over and said she was fine. We’d videoed the behaviour and he was baffled by it so referred us to Colchester Children’s Assessment Unit. This is where things changed for us forever.
They done countless blood tests, blood gas tests, she had a lumbar puncture, MRI, ultrasound, put on drips, anti biotics, monitored every 2-4 hours all to try and find out what was going on. Her stats were always fine. She did run cold most of the time but they didn’t seem too concerned. She had also always been a heavy breather, again they weren’t too concerned. She was a puzzle.
We got the MRI results in the 17th of November, she was 8 weeks old. They expected to see some abnormalities in her brain matter but didn’t expect to find so much. They didn’t know what that meant for Seren and her future. It could be a food intolerance to not being able to walk or talk.
Seren had a Mitochondria Disorder. Her cells weren’t able to sufficiently break down her food & turn the proteins into energy. This resulted in her body working harder & using it’s secondary method of creating energy; resulting in high levels of lactate. Lactate in simple terms is lactic acid. Ideally levels should be less than 1.5. During Seren’s first stint in hospital they spent most of the times between 5 & 6. The lowest it ever got was 3.4. When Seren was having a bad day, this would have meant her lactate levels were high- we all know how uncomfortable lactic acid is after a work out & her discomfort became very obvious. Colchester hospital worked with Great Ormond Street & got Seren on medication to help her- which is did temporarily.
Mitochondria disorders are complex. Colchester Hospital were doing their best but were not specialists & she needed to go to a specialist hospital.
With her lactate & pH levels stabilised we could bring her home, she was exactly 2 months old. We got home & tried to continue life as normal, do everything we wanted to do with Seren, see friends, family, walks, lunch just the 3 of us, watch rugby together, play in the snow & baby classes. It became very difficult. If she was having a bad day, we couldn’t get her in the pushchair or car seat. But we done our absolute best to make memories with Seren- little did we know how important those memories would become.
Seren then caught a cold & began to struggle with breast feeding so we swapped to expressed breast milk in a bottle- she loved the ease of it. Life became about making Seren’s life as easy as possible. Too much exertion would trigger her episodes. Even splashing too long in the bath & playing with toys would trigger them. So we spent lots of time cuddled up together.
Seren also started suffering from apnea’s. This is where your breathing becomes shallow and you stop breathing momentarily. It does happen in babies, particularly if they are tired but because of what we knew about Seren’s brain abnormalities it was a concern. During the last week that we had Seren at home she had many apnea’s. It was very scary & in the early hours of December 10th they became too much so we called an ambulance.
Seren then found herself in Colchester’s Children’s High Dependency. The staff there were all amazing. They tried new medication, they had her on to monitors & fed through a tube for safety. She developed a chest infection so they were now treating this too. We then waited for a bed at a specialist hospital where they could help Seren further but no beds were available.
Saturday 16th of December, Seren’s apnea’s increased, she wasn’t safe anymore & needed to be in intensive care. Seren gave them no choice. She was sedated & put on a ventilator & emergency transferred to Addenbrookes Paediatric Intensive Care Unit- PICU.
When we arrived, PICU weren’t too concerned about Seren’s breathing, she was working with the ventilator. They wanted to understand her high lactate & ran more tests. Whilst under sedation she still moved when we talked to her. She’d grip our hands & move her head. She knew we were there. They continued her normal medication, tube fed her breast milk & let us help bath her. We were scared, but finally felt she was safe.
On Tuesday 19th of December, the neurologist assessed Seren & then had a meeting with us. He explained what he saw, had seen in the past & what he was seeing in Seren.
Due to Seren’s mitochondria not being able to sufficiently break down the proteins to create energy this meant Seren’s brain, which needs the most energy was being starved & therefore wasn’t developing. Her brain had stopping communicating & was no longer telling her to breath. She wouldn’t be able to come off the ventilator. There was nothing they could do.
We felt like we were under water & drowning. We couldn’t believe what he had just told us about our little girl. Devastated & in shock we got back to Seren’s side. Her body was already shutting down. She was no longer responding to us. She was no longer absorbing her milk or medication.
We had our parents with us & called our best friends & siblings- they would be there tomorrow to have her christened & say good bye.
People have asked why we decided to have Seren christened at that time. The truth is, there was so much we had planned for Seren. Things we wanted to do, take her, show her. They were all being taken away. The one last thing we could do as a family for Seren was to have her christened. We’d already made cards to ask her godparents, so we asked them that morning & together we got her christened. The nurses let us bathe her & get her dressed. She was still so beautiful. Then one by one they got to say goodbye.
Time was then up. It was our turn. We had our last moments with our little girl & with Seren in her Daddy's arms, the three of us cuddled up on the sofa & they came to take her off the ventilator. We read her a final bed time story. We took our time & cuddled her tight, we then wrapped her up & put her in her bed.
She was finally at peace.
We have learned more about Seren’s condition but still we don’t have an absolute answer. Mitochondria disease is what they called it. They say the condition is progressive & as she grew it got worse. The chest infection would have contributed to the acceleration. They say it is in her genes but as yet we don’t know how she came to suffer with it, we may never know. It is extremely rare. Some babies don’t make it home. But Seren was strong, a fighter & even though her condition was severe were will be forever grateful that we had so many precious memories at home with her.
Life is not the same without Seren & we will never be the same again.
The saying goes- ‘it’s what’s on the inside that counts’ & for Seren that was most certainly true. Having seen pictures of Seren, she really was beautiful & it is so hard to comprehend that something so perfect had something so wrong. But she will always be perfect in our eyes & hearts.