Lewis' Fund - Loving Every Wonderful Inspirational Step

2019
How is it 2019 already?? I’ve blinked and lost years it seems.
Lewis is now 10yrs old!! 10!! How did that happen??!! Life seems to be rocketing by and not slowing down anytime soon.

Lewis has had an up and down few years. Hes had some emergency hospital admissions which have had us scared and reminded us of the serious nature of Lewis' conditions.

Our primary focus for Lewis is quality of life and we will do anything to make him smile and feel loved.
Last summer, thanks to your donations, we were able to purchase a 6ft high curved water wall for the garden. This has added a whole new dimension to the garden and he loves to splashes toes and feet in the rippling water.
Add to that the Frammock, wind mills, windchimes, fairy lights and fountain, we have managed to create a fun engaging sensory space that Lewis and his carers can use throughout the summer.
Lewis always loves being in the outdoors, breeze running through his hair and the leaves rustling in the trees. Yet with the trusty British weather we find we cant use the garden as much as any of us would like.

We have decided that this year we would like to have a more 365days a year garden so have started looking into purchasing a summer/garden house that we can attach to the decking and have power, sensory lights, WiFi, music, and books and sensory squishy toys galore!!
It would enable his carers to sit outside with him, enjoying the noises of the garden and the birds whilst remaining dry & warm/cool dependant on the weather.

With the Summer House, Frammock, suction unit and more YOUR donations are helping us provide Lewis with a fun, safe loving life with all those that love and care for him.

We hope in time we may be able to find a way of putting a hoist in the summer house so he can be out of his wheelchair when in the garden.

Please do continue to support Lewis and keep him smiling his big cheeky smile.

#TeamLewis #Fundraising #EnablingAHappyLife #Love #QualityNotQuantity #LiveLifeToTheMax #CouldntDoItWithoutYou


List of diagnosis:

Dystonic Cerebral Palsy - Epilepsy - Laryngomalacia - Periventricular Leukomalacia - Gastro Oesophageal Reflux Disease - Pancreatic Agenesis inc Pancreatic Insuffciency - Global Development Delay - Multi-Organ Dysfunction - Non Oral - Non-ambulatory - Non-verbal - PEG-J fed - gastrostomy on free drainage - colonised pseudomonas - colonised adenovirus - colonised rotavirus - neuromuscular-skeletal scoliosis with rotation 

Curved Water wall £700

Frammock £200

new P'Pod which cost just under £700 

fibre optic lights that cost £480 . 

DeVilBiss Quiet Suction Unit £600


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We also are still looking to purchase a Quiet Suction Unit as the ones the NHS supply are very loud and make Lewis jump.





Jan 2014

Lewis is currently quite poorly in hospital. He was admitted 2 days before christmas and is still here 3 weeks on. 

He has had a really rough trot, frightening all who know him by nearly being admitted to PICU (Paediatric Intensive Care Unit) after developing an Obstructed Airway post surgery.

He spent the night in High Dependancy in the end but is now back on the ward. 

He has had a PICC (Percutaneous Inserted Central Catheter) which runs along his main vein near his heart. 

Through this we are giving TPN (Total Parenteral Nutrition). This means we can rest his gut as it is trying to shut down due to Rotavirus & Adenovirus. 

He is on and off smiley but the tiny trickle of feed we give him is causing him some grief and he is uncomfortable.

He was very spoilt over christmas with the nurses being very attentive and affectionate as always. 

Hopefully over the next 2-4 weeks the TPN will do its job and boost his nutrition state. 

 

 

 

 

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My brother Steve is taking part in a massive challenge for Lewis - he is going to be taking part in various physically challenging runs over the next year inc Tough Mudder, The Suffering Race and many more. 

I will post the link to his justgiving page shortly

On the 12th October 2013 we are hosting 'A Night Out For Lewis'

This is a night of fun, dancing and eating. We will have a dj/live band,  food and raffle. 

Please check out our facebook page for full details.

Lewis is growing up to be such a cutie. He will be 5 in 3 weeks!!!

 

MAY 2012

YOUR SUPPORT NEEDED!!!!!

 

We need your help!! A very very kind person is challenging himself to help raise money for Lewis' Fund and needs your support to help raise much needed funds!!

 

On Sunday May 25th and Sunday July 27th I will be taking part in a Triathlon Sprint at Boscombe Pier and I plan on booking an Olympic distance and maybe a half Ironman distance triathlon by the end of the year. I will be doing it for charity.

 

Please have a read of www.lewisfund.co.uk. Lewis is a lovely little son to Trisha and Paul and little brother to Adam, but he is very poorly and needs a lot of support.

 

I would like to raise money for this family so they can get the things they need like standers and a new wheelchair.

 

For those who know me, know I'm active and have done a few triathlons for fun so I need to make this a challenge. First of all I would like you to sponsor me, even if it's £1. The challenge will to be

to come in the top 20%. Last year this event, known as Salty Sea Dog triathlon hosted by votwo.co.uk, had 100 participants so I will be looking at coming in the top 20. If I get there I would like you to donate just a little more. Then I plan on beating my time and position in the July event.

 

thank you to all who have donated recently. lewis is still poorly in hospital and likely to be here for a few more weeks. he is still struggling with feeds and now his dystonics are kicking off worse again!

lewis has been poorly in hospital for 8 weeks.diagnosed with pancreatic insufficiency on top of all his problems.it's been a long stay,hard watching him suffer.updates on his fb page. thank yiu for confines support!!

Lewis is now in Reception year at school and is being fitted for new standers and wheelchair!!

Thanks to you all and your kind & generous donations we have managed to purchase a footmuff, hood and rain cover for his new wheelchair to protect him through the winter months. Without your support we wouldn't be able to afford to do this!

School are currently trying Lewis in a new stander (http://www.leckey.com/products/mygo-stander/) and it if all goes to plan he should be recommended to have one at home. It will have to go to panel to agree funding so there is every chance we will be turned down and will have to fund this ourselves.

We cannot thank you all enough for your continued support for Lewis. He continues to amaze us with his smile and happy nature, even learning to "High 5" again after a year!!!!

 

 

 

Updated on Sep 5th 2012 at 10:46 PM from the JustGiving API

woo hoo!!! we have just gone over the £800 mark for Lewis Fund!lots more still needed!!pls help if u can!!!

Updated on Apr 30th 2012 at 8:17 PM from the JustGiving API

OMG I am in shock!! Thank you to everyone of you who have donated to Lewis' Fund, especially in the last few minutes. We are facing hard times with drug changes and possible life changing surgery and having to make such hard decisions is heartbreaking and hard. So humbling to see so many kind thoughtful people donating to my little man. Every penny will be used to help improve Lewis' life to the best we can. Your generosity means more than I can ever express in words. You are all amazing people. THANK YOU!!!!!!

Updated on Apr 30th 2012 at 8:07 PM from the JustGiving API

OMG I am in shock!! Thank you to everyone of you who have donated to Lewis' Fund, especially in the last few minutes. We are facing hard times with drug changes and possible life changing surgery and having to make such hard decisions is heartbreaking and hard. So humbling to see so many kind thoughtful people donating to my little man. Every penny will be used to help improve Lewis' life to the best we can. Your generosity means more than I can ever express in words. You are all amazing people. THANK YOU!!!!!!

Updated on Feb 26th 2012 at 2:52 PM from the JustGiving API

thank you to all who have donated so far! we really appreciate it!

Welcome to Lewis' fundraising page!!

Lewis is 3yrs old and has been diagnosed with moderately severe Cerebral Palsy - Dystonic/spastic, PVL, Severe gastric problems, epilepsy, Gastro Oesophaegel Reflux Disease, Gross Development Delay, Paroxsymal Dystonic Events, Early Myopia. It took 2 years to diagnose him and he spends a lot of time in hospital due to the complications that he has. He is fed via a Gastro-Jejunostomy PEG (Percutaneous Endoscopic Gastro - jejunostomy) which feeds him directly into his small bowel.

He is such a smiler, full of love and laughter, yet cannot live life the way we would all like him to.

We are raising money to fund essential equipment that will help improve Lewis' life and provide him with a chance of a brighter future.

We are looking to purchase items that will give him the chance to develop/be comfortable and have the brightest possible outlook.

We hope to purchase communication aids that use touch/switch activation so that he has a chance to make decisions

Some of the things we would love to get over the coming months/years can be found on Lewis' website www.lewisfund.co.uk or on Facebook Lewis Fund - Loving Every Wonderful Inspirational Step!

A few items are a P'Pod - a seating system, Recordable Switches, Touch Screen Communicators.

Please please please help us to give Lewis the life he deserves!!

 

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.

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