Lewis Reece Greely
(2007 - 2008)

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General Details

Name:	Mr Lewis Reece Greely
Gender:	Male
Lived:	Friday, 21 December 2007 - Wednesday, 28 May 2008

My Story

Our journey with Lewis began on 21st December 2007, after three long days of waiting for him to arrive.
His Nanny Maxine and Dad, Jason, were there to support me and be the first to greet him.

There was much excitement at the news that we were expecting a baby boy and lengthy discussions over the name we should choose. We eventually settled on Lewis Reece Greely, known as Archie while he was my bump.

To start with Lewis was very swollen and our poor little boy had brusied his face on the way into the world, but straight away it was clear that he was going to take after his daddy, with his little man face.

Almost 24 hours after he arrived, we were able to take him home, but Lewis only managed 24 hours at home, before he had to return to the hospital.

Three long weeks followed, during which time Lewis was transferred to the Evelina Childrens’ Hospital in London. There we faced a diagnosis of a rare nose condition followed by devastating news that Lewis had Holoprosencephaly.   It was hard to comprehend when the doctors told us that he had brain abnormalities because his little perfect face hid so well all the complications he had.

During those three weeks, his Grandad Mick and Nanny Maxine made the round trips to London to visit and support us. Ella, his big sister, was especially brave during that time, waiting patiently until the 19th January to have her Christmas Day, and spending two weeks apart from her parents and brother, while she waited for the doctors to “fix Lewis“.

We were triumphant in bringing Lewis home, to stay, on 14th January. Despite an uncertain future, we stood as a family by Lewis’ side ready for whatever would follow. We would never accept Lewis would be unable to achieve anything until he told us he couldn’t.

Lewis filled our home with medication and equipment, in addition to all the normal paraphernalia that a baby needs. As a family we were thrown into an unknown world of various medical professionals, hospital visits, endless research of Lewis’ condition and everything associated with it. United we made it an adventure to be conquered.

Night time seemed like a disco affair with a multitude of lights from Lewis’ sleep apnoea monitor, vapouriser and favourite musical Winnie the Pooh toy. Lewis didn’t manage to sleep much but most times we took him up to bed with a big grin on his face, and even when we were ready to drop it was hard to resist his loveable cheekiness.

He needed 24 hour care and all the love, patience, strength and ingenuity we could muster. But despite all of that Lewis made it all worthwhile with his strong personality, a smile that could melt anyone and all the accomplishments he managed, it all just made the days easier.

Lewis battled against his various complications tirelessly for 159 days. Which although may seem short, beat all the odds stacked against him even arriving.

Our poor little boy had everything against him, his breathing made it diffcult for him to sleep or drink his milk, his reflux made it difficult for him to keep his milk down, he had hormone deficiencies which reduced his ability to fight off infections, his brain abnormalities made him very insecure and unable to maintain sleep. His medication and medical notes were overwhleming for such a little baby.

On the 28th May 2008 we took Lewis for a second opinion at Great Ormond Street hospital in relation to his nose condition. It was a very difficult appointment because we were given the choice of doing nothing or putting Lewis potenitally through numerous surgical procedures in order to help him breathe better.

The decision before us was very difficult to make, but I think Lewis made the decision for us. We knew he was unwell but losing him was a great shock we were totally unprepared for.

There is no doubt that Lewis was a soldier as he fought courageously for his life. When Lewis finally lost his battle, we were by his side. Such a small baby, born at 8lb 15oz, his last known weight was just 10lb 4oz, but we were so proud of every single ounce he managed to gain.

Now we are left with a bleak void without Lewis in our lives, for us, his mum and dad we had such a full on routine caring for him, battling with his doctors and trying to get everything we could to make things easier for him that we sometimes barely know what to do with ourselves, we hadn't finished fighting for our son and now he has gone.

We can take some comfort from knowing our little boy is no longer in pain, or having to struggle anymore, and we have so many memories to cherish for the rest of our lives, but the sadness knowing we don't get to see him, hold him, kiss him anymore..........we just miss our little angel Lewis.

Latest Tributes

12 / 58 tributes

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From: Samolly

Today marks the 9th year of your passing. It does not seem possible. It still feels like it was yesterday. When you p...

From: Samolly
Song Name: Soldier boy
Artist: Soulja boy

This song is very apt for you my son. Well I think so anyway. I have not play...

From: Samolly

Marking 7 years since I held you in my arms and kissed your face, your light continues to shine so bright, from the t...

From: Samolly

As daddy told you, we were expecting another sister for you and she arrived 4 months ago today. Watch over her my ang...

From: Samolly

Always thinking of you. Especially today. 7 today. Time has gone so quickly. More so for me. As I have reached that a...

From: Samolly

Your Angel Day is always a bittersweet day to remember you my beautiful little boy. A day to remember all those litt...

From: Samolly

Today I missed you so much it hurt - more than it has done for a while my angel! You feel so close and yet so far awa...

From: Samolly

Today I missed you so much it hurt - more than it has done for a while my angel! You feel so close and yet so far awa...

From: Samolly

Marking five years since you last laid in my arms my baby boy....and you have been missed every day since. Today I w...

From: Samolly

For your fifth birthday we celebrated as a family for you....I'm sorry my angel that no message was left...the words ...

From: Nanny

I am so lucky to have 4 beautiful grandchildren, for while I may not be able to see you Lewis, hug or talk to you, yo...

From: Samolly

Hello my soldier boy, thinking of you always but especially on this day. Missing you as always. As you are probably...

Biography

Fathers Name:	Jason David Greely
Mothers Name:	Sarah Jane Greely
Siblings Names:	Ella Elizabeth Louise Greely
Country of Birth:	England
Country of Residence:	England
City of Residence:	Margate