Life for Lewis Appeal - 21st Birthday

About Lewis and the Life for Lewis Appeal

Raising money for various disability specific items and equipment.

Our Special Boy Lewis Robert Herbert.

Lewis Robert Herbert was born on the 12th November 2002 at 12:20am weighing a healthy 8.2lbs.

After keeping us waiting for a 34 hour labour and being rushed out by the consultant as he was getting distressed. Our 1st baby was here and we couldn't wait to start our family life. The next chapter for Gary & I. He was the most beautiful thing we had ever seen. We had so many dreams and hopes for our little boy.

By the time Lewis was 5 weeks old we noticed that things were not quite right. He had started to jerk alot, like having an electric shock!. The weeks went by and after seeing the Dr's / Health Vistor a number of times we finally went to hospital to get some answers.

At 12 weeks old and after Lewis going through a number invasive tests, we were told the devasting news that an EEG had confirmed that Lewis was having seizures. A condition called West Syndrome.

This news was like a tone bricks being dropped on us, and literally took our breath away. Part of us died that day along with all Lewis' dreams!. The impact Lewis' disability has had on our whole family is immeasureable and our lives have changed for ever in so many ways. Lewis fights every single day to stay alive and goes through more in one day than most people do in a life time!.

As the years went on Lewis got worse with his seizures and they were ruining his chance of ever developing normally. He went through a battery of tests, bloods every few months, ECG'S, EEG'S, Scans, MRI'S, Lumber punctures etc etc. The list goes on, this was year after year, with no reason as to why this had happened to our special boy. He had so many seizures that his little brain couldn't function properly and grow. His seizures were all drug resistant.

So today Lewis' seizures still remain extremely drug resistant, and despite being on at least 16 different drugs over the years with different combinations, his VNS, Oxygen therapy, and a special diet he is still having around 1500 multiple seizures a day. He is now diagnosed with Lennox Gastaut Syndrome. (LGS).

Lewis is our hero and we adore him and love him unconditionally. He is our world and we would be totally lost without him.

When your world is broken like ours did, it is like having to piece back your life but always having one bit missing. And to this day we have still not found that missing piece. People say it gets easier with time, but it doesn't, the daily challenges get harder and harder and we wouldn't wish it on anyone. But it hasn't stopped us enjoying the picture and seeing the beautiful things that it can bring, even if it is incomplete.

He is our very special boy! xxxxx

My Boy

When I look in your eyes I see your pain.

I’m so sorry I can’t take that all away.

Stay strong and be brave as mummy is always here for you. I love you.

My boy, my special precious boy

Keep holding on and stay strong my boy.

In your eyes, amongst the nasty, I see your love and you’re screaming out.

I just want to hear your voice saying, mummy I love you!

But I know that will never be.

For now, I’ll keep that hope for in my dreams.

My boy, you’re so special and so beautiful.

I love you.

Yours’ forever, Mummy. Xxxxxxx (2010)

We have received incredible support and generosity from so many people over the years, but we haven't been actively fundraising for Lewis for approx 3yrs now.

Unfortuntely, we are always going to need disability specific items and equipment for him on an ongoing basis, it is a proven fact that it costs 3 times as much to bring up a disabled child and adult. The costs are just relentess and Lewis is going to need help with these costs on an ongoing basis throughout his life.

Lewis is approaching 21 (12th Nov 23), so if there is anyone who wishes to donate to his appeal for his 21st, then it would be extremely appreciated by our whole family.

1) We would like to fundraise to re-vitalise Lewis' wheelchair accessible sensory garden which he loves, but it is now 8yrs old and is worn and needs repairing doing up to bring it back to somewhere near it's original state.

2) We would also like to try and raise some money for some new black out blinds for Lewis' sensory room as his existing ones have broken.

3) We would also like to be able to get Lewis a new ipad as his old one is now broken and doesn't work. He loves to watch films and listen to music when we are out and about or when he is in his wheelchair, but he can't do that at the moment unfortunately.

4) A new electric wheelchair - so we can take Lewis on walks and day trips which we currently can't do as his manual wheelchair is too difficult to push for any long distances.

5) A holiday as a whole family - This hasn't been possible for 6yrs. https://harriet-davis-trust.org.uk/the-wheelabout/

6) Finance and Health and Welfare Joint Deputyship Annual costs....

Please see below Lewis' website for more details about him etc;

https://www.lifeforlewis.co.uk/

Thank you for reading Lewis' story.

Best wishes and much love, Gary, Lexi and Lewis x