A Lift for Alfie – Alfie’s Adventures

 

We are fundraising around £20,000 for specialised equipment to enable Alfie to have as normal life as possible.

As you can see, Alfie is a twin, his brothers name is Brody-Lee.

The love each other very much, and want to spend every waking moment together, but it is becoming very hard for me to carry him up and down the stairs for bed every night as Alfie is becoming too big.

We have spoken with the local council have now given permission for a lift to be installed, that will take Alfie directly into his bedroom with Brody-Lee. But this is not funded by the government, so to have this done, we need to raise the funds.

Any remaining fund will go on further equipment Alfie may need in the coming years.

We have partnered with the Bradley Lowery Foundation who will collect all funds raised on Alfie’s behalf and keep it in Alfie’s own bank account that they will set up, and then funds will be paid directly to the builders and lift companies on our behalf.

This will make a huge difference to Alfie, he does not want to miss being with his brother at bedtime, talking all night and getting up to mischief when he should be sleeping. If you can help in any way, we will be eternally grateful.

 

Archie’s Journey

 

Archie is 3 years old, an identical twin and was diagnosed with stage 4 high risk Neuroblastoma in January this year.

Neuroblastoma is one of the rarest and hardest to cure of childhood cancers.

Archie is aiming to raise the funds to undergo a vaccination treatment in the US that will look to give him the best chance of beating the disease for good.

Archie’s diagnosis and treatment:

In December ’18 Archie became unwell and was unable to stand. After a few weeks of trips to A&E and various diagnoses, Archie was eventually kept in for extensive checks.

‘We knew it was serious when an ultrasound found a large mass around Archie’s kidney.’

On 18/01/19 Archie was officially diagnosed with neuroblastoma.

‘Our lives had immediately turned upside down. We felt so helpless and couldn’t believe this was really happening to our little boy.’

Archie has 2 tumours around his kidney and spine. The disease had also spread to other areas, including his bones and bone marrow.

Archie’s treatment quickly began the day after his diagnosis. Treatment for Neuroblastoma is long and aggressive, but Archie is taking it in his stride. It is tough, but Archie always manages to smile and make the nurses laugh.

Archie has now finished his first course of chemotherapy which has slightly reduced the areas of disease. He will now undergo further chemotherapy to greater rid the disease and reduce the size of the tumors. This will then be followed by surgery, radiotherapy, intensive chemotherapy in isolation and immunotherapy, along with other things along the way depending on how he reacts to the previous treatment.

The treatment, if all goes well is expected to last up to 18 months. The NHS are fantastic and doing everything they can. However, this is an aggressive and difficult disease Archie is fighting.

Children that successfully complete Neuroblastoma treatment and become ‘cancer free’ still have a 50% chance of relapsing.

Once a child relapses with Neuroblastoma, 90% will not survive.

Archie is aiming to raise the funds to receive a vaccination treatment available in the US once treatment has been completed. The vaccination should eliminate the chance of a relapse.

Archie is a fighter. He is an identical twin and suffered with Twin to twin transfusion syndrome while in the womb. His mum had life saving laser surgery at 17 weeks inside her womb to allow Archie and his brother, Henry to feed and grow.

Archie and Henry spent their first 6 weeks in intensive care and Archie has been growing into a strong, caring boy with a cheeky smile since.

Archie and Henry have been together from their first minutes and it’s hard for them being apart while Archie is undergoing treatment. When they do get to see each other, their love and smiles are amazing to see.

We are aiming to give Archie the best possible chance of continuing to bring smiles to everyone’s faces in the future and continue to be Henry’s partner in cheekiness.

How can you help?

There are lots of ways you can help Archie:

– Donate via Archie’s fundraising pages

– Follow and share Archie’s Journey via Facebook

– Hold a fundraising event yourself or support an already organised event by attending or donating prizes etc

We have lots of events in the pipeline, so please message Archie’s Facebook page or email contact@bradleyloweryfoundation.com for further details, if you are able to help in any way.

All funds raised via this just-giving page, are held as restricted funds for Archie, in his own BLF bank account.

 

Ella’s Hope

 

Hi everyone! Some of you may know Ella, some of you may not. Just to give you all a quick run down.

I’m Gemma – Ella’s mummy

Ella suffered a bleed on her brain at 6 weeks old – which left her with a hypoxic ischemic injury which caused her to have quadriplegic cerebral palsy with spasticity and dystonia Seizures are a part of her daily life where she can sometimes have up to twenty a day, but we try to control them with her medicine. She sometimes shows reactions to lights but then she was registered blind at the age of 1 which means shes never seen any of her family.

Ella has been in PICU twice already in an induced coma, and suffered and overcome pneumonia twice in her small life. She doesnt have a safe swallow so needs to be peg fed 3 times a day – twice in the day she enjoys blended diet things such as weetabix, spag bolognesse, chicken dinners which goes straight down her peg. She has medicines every 4 hrs to try and keep her comfortable along with all the change in positions and physio she has! Caring for Ella is a 24hour job.

Ella is nearly 3! Her birthday is the 18th march

We all live in Hexham and Ella has an older brother Charlie who is 5, and absolutely adores ella! Sometimes he will say to me mummy why cant ella play? mummy when will ella walk or talk? And the honest truth is, i dont know and these things may never happen, or wont happen as the doctors have said.

I want to take Ella to Panama city in america, for Stem Cell Treatment where she will recieve 40 million expanded allogeneic mesenchymal stem cells which will try and help repair the brain damage, this isnt a guarantee though. We could go all the way and it not be successful but also travel all that way and give her the best possible chance in life. It could reduce seizures, reduce spasams, help with her vision. The possibilitys are endless and i have read amazing reviews and stories from this clinic!

Ella really doesnt get to enjoy the simple things in life as we do and the things we all take for granted on a daily basis. It would mean the world to Ella and all of us if you could please donate and take part in helping to raise the amount to get her to america and give her the only shot at a better quality of life.

Thankyou all so much for reading

Flynn’s Journey

 

Flynn was born December 24th 2016 the most happiest little boy, hes now two years old, and in October 2018 was diagnosed with ADA-SCID which stands for Adenosine Deaminase Deficient – Severe Combined immunodeficiency.

ADA-SCID is a a genetic disorder and is caused by mistakes in a gene that makes up part of the immune system, in Flynns case the ADA part is one of the rarest kinds of SCID there is.

Treatment wise, we will travel to Great Ormond Street hospital where he will undergo a bone marrow harvest so they can correct the genes. He will then return to the hospital after a short while after the gene have been corrected, he will then be given 2 days of chemotherapy to wipe out his remaining immune system, and the new genes will be injected back and then a long road of recovery but will all be worth it.

We are fundraising as we may need to spend up to 6 weeks in London, and accommodation and living costs are not covered under Flynn’s treatment plan.

 

Oakley’s Walking Fund

Oakley’s Story.

Hi, we have been holding a range of events since 2013 to raise money for our 8yr old son Oakley. The fundraising target is £80,000 and we would like to thank everybody for their support and fundraising efforts so far, which has enabled Oakley to go to America for an SDR operation, successfully performed By DR T.S PARK in 2013 and four years of physiotherapy and strength conditioning training, getting him up on his feet and taking independent steps and walking short distances. However, we still have a way to go to reach our target.

Most recently on the 15th of August 2017 Oakley had a follow up operation called “Hamstring lengthening” which was performed at Southampton general hospital by Dr Caroline Edwards. This operation released/lengthened his ham-strings enabling Oakley to straighten his legs better. After a lot of strength and conditioning training Oakley will be able to walk better and without a painful crouch.

We have put this operation off for four years now, concentrating on Oakleys strength. Oakley will be forever having intensive, painful stretching programs for years to come. The Hamstring lengthening operation can only be done a couple of times as the surgical procedure becomes more and more difficult. The strength/conditioning training and physiotherapy is very expensive which is why he constantly needs funds coming in.

Eventually, after a great deal of hard work and therapy we will all see Oakley’s life change as he will be walking almost as normal as you or I, having a much better lease of life, being able to run an play with this brother Mykey.

More about Oakley and his condition:

Oakley was born nine weeks early alongside his twin, Mykey. The birth was very eventful as we had to get through a snow blizzard which took two hours to do four miles to get to the hospital in time! Oakley was born half an hour after his twin Mykey and it was during that time that we believe Oakley incurred some brain damage.

Oakley was 18 months old when he was diagnosed as having Spastic Diplegia Cerebral Palsy. A couple of the symptoms are a painful tightness in his legs, and next to no strength in his core, so he was unable to walk or sit independently.

We are now fundraising with the Bradley Lowery Foundation.

Caring for Craig

Craig Rennoldson is fourteen years old and was born on the 30th December 2004. Shortly after his birth Craig was diagnosed with severe cerebral palsy meaning that he cannot walk, talk or see and is fed via a PEG in his stomach. Craig also has epilepsy and recurrent chest problems.

Craig has had surgery to insert metal rods in his spine and to repair his hip. Craig is a very happy boy who enjoys school and music.

Craig is looked after by his mam, dad, brothers and sisters but as he is getting older and bigger is getting harder to lift him. At present we have to carry Craig up and down a steep flight of stairs to put him to bed, as you can imagine, this is getting harder as he is getting older.

We are looking to raise around £25,000 to build an extension on the side of our property on the ground floor, to enable Craig to have a safe and secure bedroom and a shower room, any remaining funds will go towards equipment to aid the family when lifting etc

 

Follow Craig’s Journey –  

 

Click here to donate – 

 

Ilhan Cancer Treatment Fund

My beautiful son Ilhan was diagnosed in may 2013, with refectory desmoid tumour/fibrosarcoma in his head and neck.

Over the course of 5 years he has received substantial amounts of chemotherapy, 4 different regimes, had maximum proton beam radiation, he has being left with a lot of side effects mainly due too the location of his tumours , he has a tracheotomy for breathing and has a peg tube for feeding and medicines!

Whilst on treatment in June 18 Ilhan had a relapse, this came on all of a sudden in the space of 5 days he went down hill, after a scan Ilhan was immediately placed on a very intense 96 hour regimen of chemotherapy at that time, we were told as a family that it was unlikely Ilhan would recover, that any treatment was too bide us time too make memories, this chemotherapy made Ilhan really unwell but a miracle after a 2nd cycle and a week at home too start the 3rd, my beautiful boy started talking and it only got better by the end of the 4th round Ilhan was back too his old self, this is the tricky part is Ilhan’s heart function was getting low, so we all agreed too switch too a new drug, PAZOPANIB this is a targeted therapy chemo and works by blocking receptors, Ilhan’s tumour is TKI POSITIVE, Leeds children’s oncology have kindly funded 3 months, on the agreement of funding being given by NHS England!! Right now after 4 REJECTED appeals we are left with no option other than too SELF FUND, without this Chemotherapy it is certain that Ilhan will relapse , and be placed on palliative care , WE HAVE NO BACK UP OPTIONS OF IV CHEMOTHERAPY OR RADIATION! This chemotherapy costs around 800 pounds per month!! Please help my beautiful boy we need too raise funds for another 21 months of chemotherapy £16,800, any amount will help!

I am awaiting a letter from Ilhan’s consultant In regards too monthly costing which I will add too the go fund me when received!!

Any money over the amount raised will be donated back too the charities that have supported us over the years!!

 

 

Terms and Conditions
All cash donations are held by BLF in restricted funds for Ilhan’s campaign.
All fees are paid for by BLF general funds.
BLF will hold funds on behalf of Ilhan and pay invoices directly.
In the event of the child not needing funds raised, BLF will retain 50% of the funds raised for their general charitable purposes such as grant making, fees for funding platforms etc
Parents will then be given a choice to donate the remaining 50% to an already registered children’s charity of their choice.

 

Future for Maddi

We are fundraising to help get Maddi to St Louis Children’s Hospital in America to have a life changing surgery called Selective Dorsal Rhizotomy (SDR).

Maddi is now 17 years old and was diagnosed over 2 years ago with SPG15 (Hereditary Spastic Paraplegia 15). Its a very rare and life limiting disease and at present Maddi is the only one in the U.K. that we know of. The disease causes paralysis of the limbs as-well as additional neurological symptoms that can affect the eyes, along with Parkinson’s and other brain abnormalities. So far Maddi is still trying to keep up her strength with PT but she can only walk a short distance before exhaustion and pain takes over and her balance has become seriously affected which causes her to fall over.

In the last year now we have been fundraising to help raise money to support Gene Therapy research for SPG15. Work is still ongoing for this therapy in hope of one day it will halt the disease, however, this research takes time and we know there will be too more damage caused to Maddi before it will happen.

The surgical procedure called Selective Dorsal Rhizotomy (SDR) is to try and give Maddi some quality of life and to hopefully keep her walking for a while longer.

SDR is not available in the UK for Maddi’s disease, but the world leading specialist Dr Park at St Louis Children’s Hospital has already treated other patients with Hereditary Spastic Paraplegia successfully and so many CP children with some fantastic results, he has suggested this would be a good option for Maddi.

SDR is a permanent life changing surgery, it takes away almost all of the spasticity. It would prevent bone deformities and contracture that can happen due to spasticity and weakness and improve function. This should then take away the pain and the stiffness that SPG15 causes.

We as a family would really need some support to help raise funds in getting Maddi to St. Louis.

THANK YOU.

 

Terms and Conditions
All cash donations are held by BLF in restricted funds for Maddi’s campaign.
All fees are paid for by BLF general funds.
BLF will hold funds on behalf of Maddi and pay invoices directly.
In the event of the child not needing funds raised, BLF will retain 50% of the funds raised for their general charitable purposes such as grant making, fees for funding platforms etc
Parents will then be given a choice to donate the remaining 50% to an already registered children’s charity of their choice.

 

Seany Boy’s Journey

 

Sean is our 10 year old beautiful son, Sean was a perfectly healthy baby in my stomach but during his delivery he got starved of oxygen and as a result of this he now has severe cerebral palsy, Sean is blind, partially deaf, cannot walk, talk, sit up or hold his own head up. He is tube fed, has severe epilepsy, severe scoliosis and his life expectancy is only to his teens.

As we know there is nothing at all that can help our sons brain damage we hope one day we can take Sean to the USA for stem cell treatment in the hope this will better his quality of life.

We have been researching stem cell treatment for many years and know that in the future this will probably be out in the UK to treat people with cerebral palsy but not in our sons life time.

We have currently applied for an expanded access program at the duke university in the USA to use the stem cells which we stored 3 year ago from his siblings placenta as we know these stem cells are best to use as are a 1-4 perfect match to our sons.

We have spoken to a lot of families that have already had this treatment and very soon after they have seen very good progress, such as their child’s vision has improved, reduced seizures/spasms, their muscles less tight, they got a bit head control and really hope that we can get our son this same treatment in the hope it could help him in any way.

We want to give Sean the chance to receive this treatment and to reach his potential in his short life and for it not to be too late where we always wondered if it would have helped him or not.

Our Seany boy deserves this chance in life, he doesn’t want the latest mobile phones or x boxes just a chance to maybe see one day or have less seizures and painful spasms.

This treatment costs roughly £20.000, so we hope to raise this money ASAP.

LETS GET OUR SEANY BOY TO AMERICA FOR STEM CELL TREATMENT.

We already have £7000 raised with the previous charity, so this has been taken off the total x

 

Terms and Conditions
All cash donations are held by BLF in restricted funds for Sean’s campaign.
All fees are paid for by BLF general funds.
BLF will hold funds on behalf of Sean and pay invoices directly.
In the event of the child not needing funds raised, BLF will retain 50% of the funds raised for their general charitable purposes such as grant making, fees for funding platforms etc
Parents will then be given a choice to donate the remaining 50% to an already registered children’s charity of their choice.

Reece’s Wheels

My son Reece has cerebral palsy, he has always used a wheelchair, having many different types over the years, the past two have been RGK wheelchairs these chairs have given him so much independence as they are custom built and lightweight, this year our NHS wheelchair service have stopped giving these chairs out as they have made so many cuts to their service, the big problem with this is Reece is really slim and no other make is custom built like the RGK chairs, this is where we need help, these wheelchairs come at a cost £3500 is what we have been quoted and we need help to cover this, this is where you all come in, if we can raise this quickly Reece could have this wheelchair in time for Christmas and be able to carry on being as independent as possible and hopefully do much more than he does already.

 

Terms and Conditions
All cash donations are held by BLF in restricted funds for Reece’s campaign.
All fees are paid for by BLF general funds.
BLF will hold funds on behalf of Reece and pay invoices directly.
In the event of the child not needing funds raised, BLF will retain 50% of the funds raised for their general charitable purposes such as grant making, fees for funding platforms etc
Parents will then be given a choice to donate the remaining 50% to an already registered children’s charity of their choice.