Smiley Riley

Thank you for taking your time to read my story... let me tell you a bit about me and my journey! My Mummy, Daddy and my Grammie were so excited to see me again at 20 weeks gestation and to find out if i was a little boy or girl, never did they think that their whole perspective of becoming parents was about to change. I was diagnosed with a suspected cleft lip and palate, oh boy !! mummy and daddy thought that this was bad news, there was soo much this could stop me from doing, including eating properly, talking properly, hearing and seeing properly and also getting bullied, not to mention all the operations it would involve.  A fetal medicine scan was scheduled for the following week where my bilateral cleft lip and palate was confirmed. The consultant said i was very small, so with my cleft and small size he suspected there may have been an underlying problem so recommended a amniocetisis. Mummy was soo scared to have a huge needle put straight into where i was growing, especially with a risk of miscarrying me, but she watched me stay perfectly still on the screen whilst the needle went in and the consultant extracted what he needed. 3 long weeks went past and a meeting was called.... My chromosones had been growing for 3 weeks and my 4th chromosone had a deletion on the P arm of 15.32. This ment i have Wolf Hirschhorn Syndrome A Life Threatening Rare condition.  The Doctors hadnt heard much about my syndrome so they printed a summary of the symptoms i may get and mummy & daddy had to read through it and make a decision on whether i would have the chance to try enter the world and tackle the symptoms/syndrome. Mummy and Daddy only had a week to decide and the list of symptoms where so scary, i surely had no chance of surviving!?  The fetal medicine team had advised a termination as they said I wouldn't survive so after a week of crying, brain storming, blaming them selves, imagining and trying to understand, the decision was made that id have every fighting chance (not that the doctors agreed) My family decided that how could they arrange me a funeral and say some words about me when they'd never no what i could do, my strength, if id be strong enough to breath, if id reach any milestones unless they gave me a chance?! they would never have any memories of me other than they gave up! so they lived on hope and faith and felt i had grown this far so i would continue to grow with all their love, support and fight. So every month i was checked on and i was growing nicely still, only tiny but still growing and at 37+5 weeks i was born via emergency c-section as Mummy hadnt felt me move and when i was monitored it wasnt looking great, it was so fast Daddy didnt even make it to the hospital in time to see me be born. I was born into the world, at 3 pounds and 5 ounces, still fighting and i took a small gasp of air my self then needed ventilating for 3 days. It was a miracle everyone said but i may not have long.... how wrong were they?! I took my first breathes when i was 3 days old and no longer needed to be ventilated, needed a little help with some oxygen but no more tubes in my mouth. I had to be tube fed through my nose as i was too small and my swallow wasnt safe due to my cleft. Then the tests and scans began. In my first week of being born i had a CT scan, Echo, EEG, ECG and ultrasounds. They found i had a few Heart problems, pulmonary valve stenosis and a ASD, premature lungs, i had glue ear so my hearing wasnt great, a hypospadius, hydronephrosis, and a mass on my kidneys. I fought a few infections during my stay in hospital and was finally aloud home after 5 weeks.  After my discharge from neaonates i had lots and lots appointments with all my new consultants who looked after all my different problems, and sods law at 3 months old i got testicular torsion and under went my first general anesthetic to have my testical removed. Mummy and Daddy had never seen me in soo much pain.  At 5 months old, i ended up back in hospital again as i had some breathing difficulties and gave mummy a scare on a shopping trip one day when i stopped breathing, i had fluid on my lungs and needed a hospital stay to recover! Lots of back and forward to hospital over the months with infection i had picked up, coughs and colds that i really stuggle with and lots of appointments for check ups. When i was 9 months old there was some bad news about my mass on my kidneys... My neuroblastoma had grown up to 8cm big in my tiny body, it was squashing alot of my insides, could be seen when i stretched and spread to the bone in my shoulder, so it was time i started some chemotherapy. From my past hospital visits all the doctors had learnt how difficult i was to cannulate so they decided to go ahead and give me a central hickman line which would also benefit me through having the chemotherapy. I started my first chemotherapy the day after my christening when i was 11 months old. I lost my hair, got very poorly all the time as my neutrophils dropped to non existent, I had lots and lots of hospital stays, scares when i was really really unwell but i was always happy inbetween being unwell. in actual fact whilst the chemo was being pump through my veins i thought it was great fun and would laugh, wiggle and smile the whole time, but then the sickness would kick in and then my neutrophils would drop and then thats when everything become horrible.  I done this every few weeks for 6 months until my tumour was small enough to remove surgically. In the June of 2014 i underwent a 9 hour surgery, a whole 12 hours was scheduled out for me! It was such a risky operation as my tumour had grown around my aorta and cava ( the 2 main arteries to my heart) and the outter skin of the arteries had to be sliced for the tumour to detach itself. The operation was successful with only 5% of the tumour being left inside me, but if they removed it i would never be able to use my legs as it had grown into the muscle, but thankfully after the biopsy, the mass was mainly dead after the chemo so the last 5% wasnt to much of an issue. My tumour may return over the next 5 years, but i beat cancer once, im sure i can do it again! i Recovered so quickly and was using my tummy muscles after only 5 days! i had been sliced right through the middle of my tummy from one side to the other and i healed so quickly! (The doctors said I was truely amazing).   The next month i went back for another surgery to have my gastrosomy feeding peg fitted so my face could be tube free. we had a few problems with the peg but it works wonders now and nobody has to worry that i wont get all my medication I need to have daily and all the fluid and nutrients i need to grow even stronger. In April 2015 i went for my next operation at oxford hospital, where i had my ceft lip repaired, it was the scariest thing having my face stitched up and having to learn to open my mouth to breath, before the op my mouth was always open, but after the op my nose was swollen and blocked with dried blood, my face was bruised and swollen and it took a little while for me to understand what had happened, but now 4 months on you can barely see my scars. During my cleft operation i also had grommits fitted to help with my hearing. I also suffer with epilepsy and often have seizures... my longest was for 3 hours and they are always really hard to come out of even with loads and loads of meds, i always have so many meds that im soo knocked out after i have to stay ventilated for a few days until im rested enough to breath on my own again.  Sometimes i have to stay in hospital too when i catch a simply cold,  bug/virus as it makes me soo poorly and recently i had to have a lumbar puncture too. I have had lots of other hospital stays that i haven't mentioned but i really would be going on forever. I forgot to mention that the doctors said i wouldnt live past 2 but guess what.... i have and am now 2 years and 7 months old! My head control is still sometimes a little wobbly, especially when im tired,  I still cant sit on my own but im trying really hard, ive been practising my standing everyday to build up my leg muscles and i practise eating with a few tasters every now and then but i really dont like it, food makes me gagg! I also was diagnosed with a cows milk protein intolerance when I was a few months old so I always have special milk and I'm not allow any diary products or I get a poorly tummy, spotty face and blood in my poo poo !!  I often get congested so i struggle a little with breathing and that horrible suction has to clear my secretions, i get horrible Reflux and i silently aspirate so im not aloud any fluids orally and it's important that I sleep slightly inclined.  I regually have physio therapy, Occupational therapy, Portage worker, Speech and language therapy and see the lady who measures my feet to support my week ankles when i practise standing. I have a Oncology, Respiratory, nephrology, Urology, Neurology and Cardiology consultants, and have my ears and eyes regularly tested ( I have a big team) If every one had to describe me with 3 words i think they would say i was cheeky, handsome and Smiley. Ive been through soo much in my short time but it never gets me down and i still fight to be able to do "normal" things. The Only problem is i need alot of equipment to help me do these things, a lot of special sensory toys that i can play with but it is all soo expensive.  So please if anyone would be kind enough to support me, encourage my development and give me the opportunity to continue to thrive, i no my whole family would be soo grateful to see me soo happy and learning so much. I have a lovely space at my home that would make a perfect sensory room and any help towards funding my equipment to make it the best sensory room ever would benefit me soo much!

Thank you kindly in advance
Smiley Riley x