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Mission for Macey

Macey Clarke

We would like you all to meet Macey.

Macey is 4 years old and has had an SDR operation to reduce the spasticity of her muscles. However, to make this operation beneficial for Macey she needs intense physio which can be quite costly. We are supporting Macey and her family to raise £30,000 for her physiotherapy.

To follow Macey’s story, you can find her Facebook page here: https://www.facebook.com/missionforMacey/

To donate – https://www.justgiving.com/campaign/missionformacey

 

 

Frankie’s Freedom

Frankie Palmer.

We would like you all to meet Frankie.

Frankie is 3 years old and has cerebral palsy.

We are supporting Frankie and his family to raise £90,000 for an SDR operation which will reduce the spasticity in his muscles. We are hoping this will help him to sit/stand.

To learn how to donate and follow Frankie’s journey like his facebook page here:

https://www.facebook.com/pg/frankiesfreedom14/about/?ref=page_internal

To donate – https://www.justgiving.com/campaign/frankiesfreedom

Jack Jeffreys Fight Against Neuroblastoma

Jack Jeffreys

In August 2017 a few days after his 4th birthday, Jack was diagnosed with Stage 4 Neuroblastoma, an aggressive cancer which mainly affects children under the age of 5. Since then he has undergone Radiotherapy and Immunotherapy. Sadly the tumor has not shrunk. In May he had another painful lump. On 2nd June he started a second cycle of chemotheraly. We need to raise at least £200,000 very quickly to give him the best chance of lifesaving treatment. They think due to his high risk neuroblastoma, antibody treatment is needed. However, it is not funded by the NHS and no child has been accepted by NHS England for funding so it has been either sponsored or privately funded. We are raising funds to give Jack the best possible chance of ridding his little body of this horrible cancer. We all have such power in our social networks to massively increase our fundraising so please share this far and wide to raise as much as possible to help Jack and his family get him the best treatment.

To donate – https://www.justgiving.com/campaigns/charity/thebradleyloweryfoundation/jackjeffreys1

Facebook – @JackJeffreysFightAgainstNeuroblastoma

 

#AHeroForChloe

Meet beautiful Chloe everyone.

Chloe is 7 years old and has a rare blood disorder Diamond Blackfan Anaemia and needs a matching blood stem cell donor. This means Chloe’s body doesn’t produce red blood cells and needs regular blood transfusions to actually stay alive.

Chloe has recently developed antibodies in her blood and urgently needs a blood stem cell donation.

BUT … a matching donor has not yet been found.

You can register as a potential blood stem cell donor and go on standby to save the life of Chloe, or anyone else in her position.

 

If you’re between the ages of 17-55, please register below.

 

You can also follow Chloe’s journey on her Facebook page

Chloe’s DBA fight #aheroforchloe

 

Huey Humphreys

After seven long heart breaking years of trying for Huey, our dreams came true after multiple failed IVF Treatments. We were going to be a mummy and daddy!  We had a fighter right from the start, something that was simply made to be, not perfect for some but frankly just perfect for us. Huey decided to arrive 14 weeks early, I was bleeding very heavily at home and had to be rushed in to the delivery suit. Huey’s heart rate was dropping and I was actively bleeding, a doctor with glasses said we had to deliver now! I remember the words clearly, clear as daylight.  I looked into his incubator, at my beautiful little boy, fighting for his life, being pumped with medications, more wires than baby! Not one person in that room ever thought he would make the next hour, each hour passed and he was clinging on to life. The feeling of utter helplessness, waiting for something to happen, good or bad. The doctors and nurses were trying there very upmost to help, guide, and comfort us through the truly most horrific time of our lives. Praying and trusting in total strangers to look after the most precious thing you posses, why us? why him? I would not wish this on my worse enemy! You get on the rollercoaster ride of ups and downs, one step forward four steps back and all you can do is hold on for dear life. Huey fought sepsis several times, had blood transfusion after blood transfusion, and has had brain surgery twice, the list goes on and on! After a very long and bumpy stay in hospitals we were finally able to take him home, proving so many people wrong, keep reaching for them stars Huey, you deserve each and every one of them. Huey is showing lots of promise we have just turned two. He is very loved, very wanted young boy. We want to raise as much as we can towards this walker for him. We had a trial today and he even took tiny steps forward, this as you can imagine brought tears to my eyes. We are so very very proud of him. He’s our whole world. x

  

Jack Hall

Our beautiful boy Jack is 13 years old and has severe Quadriplegic cerebral palsy due to medical negligence at birth. Jacks under gone lots of surgery throughout his life but he’s a strong boy with lots of potential. We are asking for your help and support to get Jack stem cell treatment that’s not available in the UK. This type of treatment has no known side effects and has the possibility to help Jack increase his abilities. We want to help Jack and realise this is not a cure but feel after years of research this could be amazing for him. This cellular stemcell treatment is not available in th UK yet so we would need to travel to Panama South America for the treatment. After giving birth to our baby daughter in February 2016 we had planned to bank her umbilical cord blood with a private company called cells for life at our own cost to hopefully use as part of siblings cord blood treatment for cerebral palsy at dukes university in America which has been known to give children with cerebral palsy amazing treatments with either there own cord blood or a siblings ord blood but the hospital took to long to give the phlebotomist our baby’s umbilical cord and she only managed to get 2mls of blood plus tissue so this wasn’t enough blood for treatment to go ahead. Stemcell treatment requires private funding at a cost of around £18,000 for the treatment with flights, accommodation to Panama City. We have managed to raise money ourselves but we can’t afford to get it all and if this is a success we plan to take Jack as an ongoing treatment so would need to keep his fundraising journey going and will need all the help and support as possible. We love our boy and won’t give up on him.

 

 

Hope Feeney

Hope is 5 years old and on the 14th April 2014, she was diagnosed with stage 4S Neuroblastoma which attacked a huge amount of her body.  She has had hundreds of treatments. At present Hope is Cancer free which is great news, but there is an 80% chance Hope may relapse which means there are limited options available on the NHS. We are fundraising so that if the time comes, Hope may be able to access a vaccine trial in the USA which is showing promising signs for Neuroblastoma children.

Any donations are greatly appreciated. Thank you all is much for your efforts to help me get better.

If for whatever reason Hope no longer needs the money, it will be used to help other children fundraising via The Bradley Lowery Foundation.

  

Miika the Warrior

 

 

 

In Sept 2015 our world changed forever, at 20 months, Miika was diagnosed with a heart condition, Restrictive and Dilated Cardiomyopathy, and we were told he would eventually need a heart transplant! In May 2017 Miika deteriorated significantly and was rushed to Great Ormond Street Hospital.  Several days later he was placed on a Berlin Heart machine, an “artificial heart” that pumps blood around the body.  He would live in hospital on the Berlin Heart until a donor heart became available but with the Berlin Heart came major risks of brain damage. Over the next few months Miika suffered two brain injuries, a bleed on the brain on Father’s Day and a stroke on our Wedding Anniversary!We can’t describe how it felt to not know 100% how Miika would be effected but he has always been a warrior and soldiered on with rehabilitation until we received the call, they had found Miika a heart! A beautiful gift from a stranger! A miracle and a tragedy in one day. Miika recovered well from the transplant and has spent the last 3 months living at The Children’s Trust in Surrey, a brain injury rehabilitation centre for children,where Miika is having intensive rehab to help him to try to walk, talk, swallow, use his right arm and improve his cognition and learning which has been significantly impaired. We have 2 weeks left and we will finally be home together again after 10 months! Miika will need intensive therapies over the next 4 years to make a real impact to his life (the NHS are only able to offer us the 3 months and to continue we need to fund ourselves).Studies show that the first 5 years after a stroke is the most crucial part of rehabilitation. We want to share Miika’s journey with you and record the moments and opportunities that the gift of a heart has given our family and use this platform to raise awareness of Organ Donation. We hope that you will join us in helping us to raise the funds Miika so desperately needs for his rehabilitation.

We are raising funds for private Physiotherapy, Speech & Language, Occupational Therapy and Intensive Rehabilitation for Miika to give him a chance of living an independent life

  

 

Ivy-Louise’s Fight against Neuroblastoma

Just imagine how much our whole lives have come crashing down. It’s been a whirlwind of a week- Ivy has had MRI scans, bone marrows, heart and kidney scans and also MIGB scans; this resulted in Ivy being diagnosed with a 6cm cancerous tumour above her adrenal gland. She has also had a feeding tube fitted in a Hickman line. Doctors and Nurses had hoped they had caught the cancer in time before it had managed to spread to any other parts of her body. We had everything crossed and hoped that this was the worst news we would encounter…Unfortunately on Friday 12th January, they were told the devastating news no parents should have to ever listen too about their baby girl. Ivy’s cancer had spread all over her little body and even into her tiny bones. Neuroblastoma is a very aggressive cancer and the doctor had said it is one of the hardest cancers to cure; this has been a living nightmare for her parents Kerri-lee and Jamie who have remained so unbelievably strong from the very start. Despite this we are focusing on the plan in place and concentrating on remaining positive for this brave little girl. Ivy has started her chemotherapy treatment straight away which was also on the 12th January. Kerri-lee & Jamie, along with her family & friends are riding this journey with Ivy and taking each day as it comes.She has been given a 50 percent survival rate that her treatment will make her all better. So whilst there’s still a percentage; there is hope for such a brave little fighter! We will never quite understand why this has happened to Ivy and why life is so cruel!

We are currently fundraising for a vaccine trial in the USA, this is the best available option for Ivy-Louise, to prevent a relapse.

  

 

Benji’s Magic Ears

 

Benji was born with hearing loss as a result of a genetic condition called Connexin 26. He was fitted with hearing aids at 4 weeks old. As time progressed it became clear that he was not getting sufficient access to sound, particularly speech and around a year ago he was referred for assessment to St Thomas’ hearing implant centre.

After regular testing, senior consultants at St Thomas and the implant centre confirmed that Ben needed Cochlear Implants, and confirmed that his limited hearing will continue to deteriorate. We have tried numerous other pieces of technology and this is the only option that will allow Benji access to sufficient sounds for his speech to develop during this critical age in his development.

The NHS England have refused several funding requests including a plea from the senior consultants at St Thomas who argued it was essential for his development. With St Thomas’ support and detailed technical papers set out by the consultants, we challenged the judgement before Christmas with an urgent response promised in advance of the Christmas holidays. After seemingly ignoring / forgetting about the challenge, they have just again refused our challenge on grounds that St Thomas say are unfounded and inaccurate.

Time is against us as Benji is at the crucial age for development and we now have no choice but to raise the £80,000 that is essential for Ben to learn to hear, speak and communicate.

We now ask you, if there is anything at all you can do to help us help Benji to get these ‘magic ears’ that he so desperately needs.