Little Angels

This section is in loving memory of the little children we met along Niamh's journey who tragically lost their fights.

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Niamh's Journey

Angel flying too close to the ground

If you had not've fallen
Then I would not have found you
Angel flying too close to the ground.

But I patched up your broken wings
And hung around a while
Kept your spirits up and your fever down.

I knew someday that you would fly away
Cause love's the greatest healer to be found
So leave me if you need to,
but I will still remember

Angel flying too close to the ground

Stories & Links

Harry was born on 19th April 2003 and started having seizures when he was only a few days old. He was taken into hospital for further investigations but all the tests he had came back clear.
Harry tried numerous anticonvulsant drugs with mixed results. Many drugs seemed effective initially, but success was not lasting, and Harry continued to seize.

At 4 months old Harry was diagnosed with MPEI and his family were devastated. He tried the ketogenic diet, and although this treatment did not stop his seizures, it did reduce them and he became more alert and happy for a time.
When he was well, he enjoyed being in his spa pool, warm baths and aromatherapy massages.

Harry developed profound and multiple disabilities, and his condition progressed and deteriorated over a number of years.
Harry passed away shortly after his 5th birthday at home in his Mummy and Daddy’s arms.

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Rylie

Rylie was born May 16, 2006. To all appearances, she seemed a normal, healthy baby albeit her parents had noticed she had a small tremor.
Rylie was a quiet baby. She sleept a lot and was slow to gain weight. She often had to be roused to be fed.

At about three weeks of age Rylie started having seizures. Numerous anticonvulsants could not help Rylie’s seizures and hospital tests could not reveal the cause. Rylie was diagnosed with MPEI at 5 months of age.

In early 2008 Rylie caught pneumonia which triggered seizures that medicines couldn’t stop and she passed away 15th March 2008 - aged 1 and three quarters.

Cooper was born on 5th November, 2002 with his twin brother Ben. His parent’s noticed early on that he was reluctant to feed and was a very sleepy baby.
Around 3 months of age Cooper started having seizures and was taken into hospital for further investigations but all his tests came back clear. He was put on anti-convulsant medication and had a VNS fitted but his seizures continued.

Although Cooper remains un-diagnosed, he suffered from numerous health problems, global developmental delay and was dependent on his parents for all his needs.
Cooper passed away in December 2008 - aged 6.

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Mollie

Mollie was born on 13th August 2004 and started having seizures when she was a few weeks old. She was taken into hospital for further investigation but all the tests she had came back clear.

Mollie tried a huge number of anti-convulsant drugs but she showed little sustained response to any of these.

Mollie was diagnosed with MPEI at 16months old. Mollie's seizures were never under control and at aged 3 1/2 her stomach started to fail and she could no longer tolerate feed. She passed away at Claire House Hospice in January 2008.

Oskar was born on 15th July 2005 and started having seizures at only 13 days old. He spent much of his short life in hospital trying to get control of his seizures.

At 6 months Oskar was diagnosed with MPEI. Combinations of drugs were not able to control his seizures and there was little
more that the hospital could do to help him. Oskar's parents made the very difficult decision care for Oskar at home with “hospice at
home” nursing support from Claire House.

At aged 18 months Oskar’s battle became harder to fight and he found it increasingly difficult to tolerate his feeds.
He passed away on 10th February 2007 at home aged 18 months.

Lily was born on 24th August 2006 by caesarean section 5 weeks early. Although very small weighing only 3lbs 8oz, Lily was otherwise a healthy baby.
Lily’s weight gain continued to be slow and her parents were concerned, then Lily had a seizure and cardiac arrest. She was rushed into hospital but amazingly started breathing again by herself.
Lily underwent extensive tests in hospital which revealed she had an underlying mitochondrial disorder and there was nothing that the doctors could do to help her - she was given only weeks to live.
Lily surprised everyone by responding well to a high calorie feed and she started to gain weight and develop. She started to play with her toys and smile.

Lily's underlying heart condition did not respond to medication and by the middle of April 2007, Lily’s weight gain slowed again and she stopped smiling as much. She started to show signs of heart failure and tragically lost her fight on 30th April, 2007 aged only 8 months.

Declan was born on the 7th May 2002, approximately 3 and half months later he had his very 1st seizure.

We were then introduced to the medical world and were given a diagnosis of Lissencephaly - which means smooth Brain.
Declan was unable to walk or talk and needed 24/7 care.

He suffered frequent seizures, abnormal movements and recurrent chest infections.

On the 15th December 2008 he suffered a double Pneumonia in both his lungs and was simply to tired to fight anymore and went
to sleep forever.

Emily and her twin sister were born on the 10th June 2000 at East Surrey Hospital they were 8 weeks premature.
Emily spent a month in the special care baby unit.
At 4 months Emily was admitted to hospital as she wasn't feeding well and after tests, she was diagnosied with spastic quadriplegia.This came as a total shock to all her family.

Emily started going to Brooklands School at 2 years old which she loved.
Emily was a wonderful happy girl always laughing and smiling, she liked nothing more than having people talking to her so that she could give them one of her great big smiles, she enjoyed life to the full.

On the 30th October 2008 Emily went for her monthly visit to respite, we said our goodbyes said we would see her after the weekend and left a happy Emily. On the 31st October in the early morning, Emily died suddenly in her sleep.

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Ava Sarah Ryan was born on 27th January 2009 after a full term pregnancy and normal delivery. She weighed 7 lbs 8 oz and cried on arrival.

Ava has feeding difficulties from birth and was a very sleepy baby. She had her first seizure at 6 weeks old and she was taken into hospital for further investigations.
Ava underwent extensive testing but no abnormalities were found, then in September 09 an EEG revealed her seizures were migrating from one part of her brain to another and she was diagnosed with MPEI.

Ava's developed pneumonia in September 09 and although she fought hard she was left very tired and weak and her little body just couldn't continue.

Ava passed away in her mummy's arms on 16th October 2009.