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Lewis' Fund - Loving Every Wonderful Inspirational Step

Lewis is now 7!!!!!

Wow a big 7!!

Lots has been happening! We are in the middle of adaptations to provide Lewis with a wet room where we can shower him safely and in comfort.
We are in the middle of ordering a new suction machine that is 50% quieter than the current ones he has. This will still fit the same tubing/pots etc so means we do not have to worry about funding them as the community will provide these.

We have just spent a week at Naomi House for Lewis birthday and had a truly amazing time!! 

We had a visit from our friend Leo who is a PAT dog who goes to the childrens wards at Southampton General Hospital! He is a true super star!!! 

We made memories - our family tree picture, swimming for the first time in 2 yrs, laughter, smiles and plenty of mummy and daddy being mummy and daddy!!

We were interviewed by ITV meridian on Lewis' birthday and appeared on the local news (scary!!)

http://www.itv.com/news/meridian/update/2015-06-22/finishing-touches-to-new-naomi-house/

Lewis continues to be a very cheeky chap, full of smiles and full of love for those around him. 

We are holding a family fun day on 11th July to raise extra funds for Lewis and to raise the profile of his disabilities and his courage.

https://www.facebook.com/events/1394616704196549/



9th December 2014

A huge thank you to all our recent donors for your donations. Many of you have made donations after hearing/seeing in the local paper ( http://www.dailyecho.co.uk/news/11653454.Vandals_destroy_six_year_old_cerebral_palsy_sufferer_s_Christmas_lights/ ) how Lewis' christmas lights were stolen from the front of our house on Sunday 7th December. 
We were mortified that someone had the audacity to not only trespass on our property but also steal from our children. 

We have received so much support from not only our local community but further afield as well. 

We cannot thank you enough!


December 2014

List of diagnosis:

Dystonic Cerebral Palsy
Epilepsy
Laryngomalacia
Periventricular Leukomalacia
Gastro Oesophageal Reflux Disease
Pancreatic Agenesis inc Pancreatic Insuffciency
Global Development Delay
Non-ambulatory
Non-verbal
Hickman Line in situ
PEG-J fed

Lewis was discharged from hospital in August after 8 long months in hospital. He was very poorly and had to endure many operations and  procedures during that admission. 

He came home to a new home, to a family that love him very much and very relieved to finally have him home. 

Once home we had to make the decision to purchase him a new P'Pod which cost just under £700 which was paid for from money donated on this page.

We also purchased him a set a fibre optic lights that cost £480 and were again purchased using money raised through this page. 

At this current time we are getting quotes for doing adaptation work and at present we will ended up being over our DfG so we are raising money to fund his hoists and his specialist shower stretcher which come to approx £4000 

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

We are also looking to purchase him home seating that is comfortable and supportive and enables him to carry out activities similar to those at school.




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. 

 

 

 

 

Items we need to purchase for Lewis are:

DeVilBiss Quiet Suction Unit
Bigger P'Pod
Indoor chair 
Fibre Optic Lights (strands, control box, switches)
Crick USB Switch Box
Computer software - for use with switches
Portable Saturation Monitor

 

Lewis recently spent 3 weeks in hosp due to 3 infections attacking his gut.

We managed to get him home just in time for us to go on holiday.

Huge thanks to anyone who has recently donated to the page. We need to purchase a SATs monitor and Quiet Suction Unit and the cost of these 2 items is nearly £1000.

We are also looking into other specialist seating for Lewis that he will be able to sit and play in.

We are also preparing ourselves for when we move house in the near future and have to carry out adaptations for Lewis.

 

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.

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So please dig deep and donate now.

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