My story by Kerry Ford

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Hi my name is Kerry Ford, I am 33 years old, a single mum of three beautiful boys and I am also the Events manager for ddrdfoundation a newly registered charity who are fighting to help with Dercum’s disease and Rare diseases in adults and children. I would like to share my story on why the charity means so much to me. If you could please take the time to read this it would mean so much.

I’m here to tell you why I believe in DDRDF!!
The big question is why? The answer is HOPE!!!!
Hope, that we can help others to fight these dreaded diseases! Hope, to help ease the pain!
The pain I’ve seen my loved ones go through, the pain I’ve felt, the pain we hear and read about everyday! And to fight for people’s rights, the right to live, the right to survive.
before I started to help ddrdf I had no hope! I saw no future, why I bet your asking yourselves? Well my friends this is why.
I’ve always tried to be a positive person, as I have p.c.o.s and depression, I coped with that through going to the gym, I also have suspected Dercum’s disease but I am praying it is just fatty tissues as they are at the bottom of my back and not painful. So like I was saying I have always tried to be a positive person, until things happen, things out of my control! When I was about 17 my mum started getting very ill, it was the start of the dreaded Dercum’s disease!!!
I watched my mum go through so much pain, PAIN we could not stop! or control, it was like it started over night my mum had always worked. In fact my mum had her own businesses she was a driving instructor and worked very hard. She started getting lumps come up that were very painful and had days she couldn’t even get out of bed. I remember seeing her crying with the pain but not just crying but sobbing with stabbing pains that is how she would describe it! She started to change into a different women over night she was a stranger not my mum. My mum was so outgoing and not scared of anything! But my mum started to have panic attacks so bad that she wouldn’t leave the house because she was so scared that someone would touch her and catch a lump by accident as this happened before when we was out shopping some one just brushed passed her as we were queuing to pay for our shopping and my mum collapsed with the pain because when you catch one lump it starts the pain in all the lumps, all over her body. Her panic attacks sometimes would get so bad I would have to put her in a nice calming hot bath so she could calm down i remember hearing her crying at night where the pain was so bad. By now her legs would be in so much pain at night they would be burning and she would get irritable leg syndrome too. I would find her laying on the kitchen floor tiles because they were so cold she would do this to try and cool the burning. It was like she was having a brake down! Through her illness and the pain she could not work, by now I was pregnant with my first child, my mum had lost her businesses and we had now lost our home too. We got evicted 2 days after the birth of my first son, with no money to rent private again we got put in a 1 bed flat through the housing. We saw so many doctors, that said they don’t know what is causing these lumps and pain! They started cutting the lumps out but they would take one out and then 7 or 8 would come back in its place!! After all that it was again time to try and see another doctor. We had that little bit of hope every time we would see new doctors and have new tests done. I sat outside the doctors room while my mum was in there, as she would want to talk to the doctors on her own at first, I think it was her way of trying to protect me from hearing how bad the pain was but I knew how hard it was day in and day out. But this one time the doctor ask me to come in I walked in and my mum was sobbing the doctor said we had to tell your mum she hasn’t got NF but she has Dercum’s disease and there is nothing we can do for her. We don’t know much about Dercum’s and we don’t know what will happen!!! All I could do was hold my Mum while she sobbed and all I could say was we will find someone that can help we won’t stop till we do! I watched her struggle everyday and night! Hoping and praying every night that my mum would wake up and the dreaded Dercum’s would be gone! Through this disease my mum has got diabetes, a hiatus hernia, arthritis in her spine and knees and much more!! She is on Morphine and lots and lots of other medication to help with the chronic pain and to try to control everything else. She is coping as best as she can with the panic attacks and chronic pain but everyday is still a struggle.
Then when I was about 19 my dad got told he had leukaemia, he fought this for 10 years!! Going in and out of remission. Then one of the last times he was having treatment for his leukaemia, they found cancer on his lung!!!
They removed half his lung, I watched the pain it caused him! and I could do nothing!!!
I watched my strong dad in pain, my rock, my hero and all I wanted to do was be his hero and stop the pain but I could not!!!
I watched him get pulled from pillar to post and in and out of hospitals all around London and Essex. Waiting to see if he would get the go a head for new treatment! I watched him go from a strong man that would walk all over London in all different weather conditions and not moan at all as he was a brick layer and would work hard.
I remember getting a phone call from Queen’s hospital! (Thats where my dad was) they said can you come down your dad is asking for you, I said yes,I will be there this afternoon at visiting time, like I always did when he was in hospital, the nurse said no think its best if you could come up now! I got straight on the phone to my mum, she was at my aunts house that was near the hospital. she got there first and she phoned me when she got there, as I was waiting for my sister in law to come and have my boys, so I could go straight up there, I knew from my mum’s voice that my dad was bad!.
When I got to the hospital the doctor called me outside, he told me there’s nothing more we can do for your dad!! What!! I said “so are you saying my dad won’t be coming home!!” He then said I’m sorry Miss Ford but your dad is no longer responding to treatment!! it’s now down to your dad’s body to fight!! which is very unlikely as his body is no longer taking to anything as his Immune system has shut down! That was when my whole world felt like it was crashing! I was numb and all I could think of was NO!!!!!
NO!! This can’t be true!
NO!! There must be something you can do!!
NO!!!! DAD YOU PROMISED you would always be around!!!!
NO!! NO!! NO!! NO!, NO!! NO!!!!!!!!!!!!!!!!!
DON’T TAKE MY DAD!!!!
I walked in the room where my dad was laying and i bent down and kissed him. I tried so hard to stop the tears from coming, but the more I tried the more they came, my dad looked at me and said Kerry I ain’t going no where, I will be home for christmas dinner yum he said (my dad loved christmas it was his favourite time.) but I looked in his eyes, they where different, he had no more fight he was tired, tired of the pain I could see the pain in his eyes!!.
The next 3 days we stayed at that hospital by his bed, and I watched my dad pass away!! it was the hardest thing I have ever and still am going through, I had to tell my dad to rest, rest in peace dad I will be ok, and at that moment he took his last breath and that is when I lost my hope!! I screamed out DAD NOOO my loving family were with me holding me but all I could think was please bring my dad back he said he would always be there for me and my boys I love him so much.
So I bet you are thinking well how did you get your hope back???
I got my hope back through my mum. My mum went through all this with me and stayed strong for me and everyone, even though the pain she is in. In her everyday life the struggle she has just to get up get dressed and do the day to day things that we do with a breeze, she was still strong for us and is always trying to help people. MY MUM is Patricia Bissessur and my mum lives in hope. Hope to cure Dercum’s, Hope to have a day with out pain, Hope to help cure other dreaded diseases, Hope to help people, Hope to make this world more pain free, Hope for her grandchild to live without pain, and as a mother I hope the same you see that’s why I have FAITH and HOPE in DDRDF.image

With sincere thanks
Kerry Ford
Event manager


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