A dream for Paola

Paola is a very special girl who for the past 19 years fought an incurable illness the details are further down the post she will not get better but you can make a difference to what time she has left, many of you already have and for that we are really grateful.

Update something quite amazing happened we went to a marina about 40 miles outside of town, Paola came with us too look at a small craft that may be able to do all we need, we got back a few hours ago and the good news is yes and it is all down to this picture 



That is the back end of the boat the place to get on and off, it is one of the rare few small boats with a big enough space for a set of wide steps, this means this boat is closer to what we want than something 10k 20k 40k, the boat itself is £3,500 and expenses needed £1,500 max for a total of £5,000 we have already raised just under £2,000 which means we only need £1,500 to buy the boat and £1,500 to cover all expenses.

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This fundraising focuses on two goals, the first part is and will allow Paola freedom to have days out, visit places and enjoy herself, to stop just surviving and instead live, that goal is £2,500 we are well on the way to completing that goal.
Visits to parks and canals, new hobbies funded.

 The second goal is to provide a canal and river boat to allow Paola to see more and go further than wheelchair can provide, we actually live next to a canal.
The main issue here and the reason the campaign amount shifts up and down so much is the type of river and canal cruiser we need has to have infrastructure or ability to be modified for disable access.

We can explore and visit anywhere within a 5 mile range of home base church yards, Victorian buildings and Parks, Paola can take pictures and paint, now imagine if home base can move 5 miles down the canal or river each week, that is the goal.

After some false starts and amounts from 10k to 200k, even finding a boat for 4,500 that allowed for everything except access spending months exploring the boat yards and brokers, I am confident that £25,000 will secure a boat and everything needed.

If you know of anyone who wishes to help or could donate please let them know, be it work or friends you could make an amazing difference.

Below is old parts of the campaign.

Thank you for reading.

It managed to raise 
Paola is a very special person who has fought an incurable illness for the last 18 years and now urgently needs your help.

Here is the auction it raised £800

Now on to the illness and how these raised funds will help Paola.

Her illness Acute Lymphoblastic Leukaemia Philadelphia chromosome positive with complications and side effects that are slowly destroying her quality of life, primary concern at the moment is her kidney functions are down by 60% and still dropping and no real way to fix it.

Paola loves to paint, take pictures and craft, no matter how much in pain or how sick she feels she never lets it beat her, never lets it stop her from helping herself and others, her illness has meant that apart from wheelchair excursions she has not been outside the city for 18 years, we go on canal walks and as I push her around so she can take pictures.

Paola is not going to get any better the best prognosis is a slow decline so while she is still well enough I want to buy a small river/canal boat and let her experience a world she never gets to see.
*changed due to lack of funds needed for the big goals*
The fund will now be used to do smaller things like
Short holiday on rented disabled modified river boats, crafting and artwork supplies travel costs to places we have never visited.

Paola's wish is that anything over what is needed is split between her three favourite charities Animal lifeline UK, Vetranch and Wildlife SOS.

Below is her story.

18 years I have stood by and watched as this illness and side effects took nearly all that she held dear and yet she never stopped helping others, never complained, never stopped fighting and while I have done all I can, it is time to ask for help.

In October the treatment to keep the leukaemia
away stopped working (interferon alpha 2b) and a new treatment started (Imatinib), while this new treatment did work and the side effects from the old medication were bad (arthritis, panic attacks, weakness, insomnia, confusion, pain and inability to walk without risk of falling) a very slow degradation of quality of life, the new medication is taking it to a whole new level, Diabetes type 2 and 60% ongoing damage to her kidney functions is the least of it last week we were told that even if they find out why the damage is occurring it is probably untreatable.

Wife's illness is to the point nothing medical can be done to cure/heal and before she is too ill I want to help realise a dream she has, to boat around the coast and rivers of the UK painting and taking pictures, £20,000 will allow us to buy an river cruiser fit it out for disability living plus the various costs of a berth and insurance and then her remaining time can be spent seeing wonders and beauty.

After talking to a lot of people who have knowledge of the UK Boating industry we came to the conclusion last night that offshore cruising should not be the priority instead River cruising, this drops the costs considerably and created a far easier goal to accomplish.

Here is the long version.

19 years ago my then girlfriend now wife fainted on her way to college almost six months of misdiagnosis and a panic call to our GP one Saturday morning, you know things are bad when the GP takes one look at her (bruises forming on her neck as we watched) called the hospital directly and shouted at whoever was on the other end of that line that Paola didn't have time for questions we needed an ambulance now, I think that I was in shock as he took me aside and told me "prepare yourself it is going to be bad".

Paramedics looking concerned when they measured her oxygen levels, after that it was a blur of blood transfusions and finally a diagnosis.

We got married while in hospital and settled in for the long haul, chemotherapy (brings it home to you when they warn you not to kiss your wife because of the toxicity in her blood) full body irradiation (when her hair starts to fall out you shave your own head so that you match) and an A-typical bone marrow transplant.

None of this was a cure, that was not possible the aim instead was to create a forced remission situation so she could go on medication to keep the cancer at bay.

We went back to living our lives as best we could, I left work and became her primary carer as it became obvious that the side effects from the medication (interferon alpha 2b) were hitting her hard and soon even walking became a challenge.

You adapt in these situations I did all that I could which never felt like enough, a good computer, love of games, books, crafting and science fiction we retreated into our own small world and as the side effects from the cancer treatment plus medication compounded early onset arthritis, weakness in muscles, insomnia and much more.

Paola never complained even though she was in pain nearly all the time refused pain killers due to side effects, her love of art and crafting meant that even though each year more of what she loved to do was no longer within reach she still always managed to not let herself be beaten always finding something else to do especially for others.

That is the kind of person she is, will spend months creating cards and gifts for our few friends no matter how much pain it causes her, when cross stitch became to painful she switched to knitting then crochet was no longer possible Fimo became to hard to handle as her muscles weakened but she never let any of it beat her, card making stamping and taking pictures she can still do so she always finds a way to make a gift or present.

I may be biased but she is my hero and I know that I would not be able to deal with it as well as she does.

As a couple we were coping as you do until August last year.

The true Irony is things actually took a turn for the better even though we moved to live next door to my mum who was diagnosed with dementia my thoughts being I can look after both of them and we can all support each other.

Bought a wheelchair and started taking Paola out on walks along the canal and local parks, just thinking about it now makes me smile the look on her face while we went 8 miles down the canal watching the boats go by those were the precious times when it almost felt like you could forget the shadow over our life.

Then came our six months checkup and what I think is called the BCR ABL test came back showing Interferon was no longer doing its job her counts were rising.

A new drug  Imatinib was the wonder drug but we were very concerned because Paola is drug sensitive, if there is a side effect then she has a high chance of getting it.

We had no choice really, it did the job and her counts went back down but almost straight away I knew something was wrong, all her side effects got worse she could hardly get up out of bed some days and her body shakes so violently that she has even more aches, I will not list all the problems she had if you do a google on Imatinib she has most of the side effects that are not lethal, it also kick started diabetes type 2 which once again we coped with by change of diet another loss for her seemed most of the food types she loved were now a no go area but what we could not fix was some how the new medication damaged her kidneys which are now working at around 40, we may have no choice but to have a kidney biopsy because three different specialists and multiple tests mean they have no idea why this has happened and they are at a loss as to any curative options even once they do find out what is causing it.

I am supposed to say how soon we need the funds, I do not know, we are going for another consultant appointment next week, I will update the page at that point.

Thank you for reading

Jason & Paola

If anyone has concerns or requires some level of proof please let us know but for obvious reasons they will not be placed on public pages.