Category: News

Saqib’s story is told so beautifully and poignantly by his brave mum Fozia:

Saqib’s name in Arabic means ‘shining star’ and he always lived up to his name. He lit up our lives by being adorable, funny, caring, clever, creative and very very cute.

He had a normal happy life for 4 years and 11 months. Riding a bike, dressing up as a ninja turtle, swimming and attending karate classes. Saqib especially loved his pre-school nursery. Just like his family, he had charmed his way into the hearts of his teachers and friends. He finished nursery in July 2021 and he couldn’t wait to start reception in September 2021. At this point his older brother was 7 years old, Saqib was 4 (soon to be 5 in September) and I was 35 weeks pregnant with our third child.

But then one day in the summer holidays Saqib complained of a headache. He was fine after 5 minutes but unfortunately the headaches were reoccurring and he would hold his head and cry. Despite being told by medical professionals on 6 different occasions that he was fine, my anxiety and fear that something was desperately wrong with Saqib became increasing high. By the end of the 3rd week and on that 6th visit to the GPs, I became that ‘crazy mum’ who refused to leave the GP surgery until the doctor listened to me and helped me. This was the 13th August 2021.

We were sent to Royal Oldham Hospital and the paediatrics began asking me lots of questions and then told me Saqib would have a CT scan. I was happy that I was being taken seriously and that we were finally getting some help. What I was not prepared for was the devastating news that the results of the scan would uncover. It never occurred to me that my perfectly happy healthy son would have cancer. The words brain and tumour never crossed my mind. The shock of the diagnosis still effects me today. “How can Saqib have cancer in his brain? Saqib is fine!” I find myself repeating this some days.

We were transferred to Royal Manchester Children’s Hospital the next day where a MRI scan was carried out. Further devastation awaited us. On the 16th August 2021, Saqib was diagnosed with DIPG, a rare aggressive childhood terminal cancerous brain tumour with a very short life expectancy of 6-9 months life with treatment or a few short months without treatment.

As fate would have it, the MRI scan revealed that the tumour was having a bleed. This meant it was working very fast and as the tumour was in his brainstem it would mean a loss of a number of his key bodily functions. And exactly that happened. The next day Saqib did not sit up or speak properly again. The cancer in his brain had paralysed his body and made him mute within days of diagnosis. I was now 38 weeks pregnant. How was I supposed to care for a terminally ill child, my 7 year old son and my unborn child? I lost control of my whole life. Everything fell apart.

Saqib was injected with a 24/7 syringe driver in his leg for pain relief and with him being so poorly the option of radiotherapy to extend his life by 6-9 months was no longer an option for us. Our 4 year old son was now placed on a palliative end of life care plan. What was especially difficult was the location of the tumour. Your brainstem is responsible for your key bodily functions such as movement, speech, swallowing, breathing and your heartbeat.

But it hadn’t spread to the top part of his brain which is where he was able to think as normal. He was essentially trapped in his body. Unable to communicate or move but wanting to do all he was able to do just days before. It was like the tumour had hit the bulls eye target and struck my son in the worst place possible.

For the next 7 weeks we found ourselves caring for an unrecognisable child. I knew it was my Saqib but sometimes I still struggle to recognise him as he was so unwell.

Being gifted a Milly’s Smile bag at this point was so uplifting. The first thing I asked the nurse was “Is Milly still alive?” My heart broke when she said “No, sadly Milly died and her amazing mum created this charity in her memory to help other families.” I don’t know why I asked that question. I guess I hoped it was all a lie and children didn’t die from cancer. I knew at this point that I would be forever indebted to Lorraine, Milly’s amazing mum. I felt like I had someone who didn’t know me but cared about me.

September came around and the next school year began. My 7 year old son returned to school and all of Saqib’s nursery friends began reception as Saqib lay on his hospital bed dying. Then days later on the 19th September, my Saqib turned 5. How painfully bittersweet to celebrate your child’s birthday whilst his life is ending.

I was also overdue with the baby and had to give birth. His little brother was born just 2 days after Saqib’s birthday on the 21st September 2021. Again how painfully bittersweet to celebrate the life of your new born child, when your other child is lay there dying.

Saqib was very happy to meet his baby brother but after that day he began to deteriorate rapidly. I sometimes think, despite being so ill, was he holding on to meet his brother with a smile before the cancer became too relentless?

Saqib sadly died 2 weeks after his 5th birthday on the 4th October 2021. His little brother was just 13 days old. I was beyond broken and was sure I too would die.

10 weeks ago he was fine. Just 3 weeks of headaches and 7 weeks of hospitalisation and then he died. His little life so short.

We came home from Royal Manchester Children’s Hospital the day he died and buried my 5 year old son. I don’t know how we coped. It must have been divine intervention.

I still can’t believe we have lived without Saqib for almost 2 years. As his nursery friends now move onto Year 2, I often wonder do they remember Saqib? He talked about them all so much.

On what should have been his 7th birthday, the 19th September 2023, my heart ached at how beautiful and big he would have been. And then 2 days later, my heart ached again when his little brother turned 2.

I am finding new purpose in life and take deep comfort in my faith which guarantees me all children that die reside in Jannah, (the Arabic word for Paradise) under the care of Prophet Abraham waiting to intercede on behalf of their parents. I can’t think where else our beloved children would be. It’s their home where they deserve to reside in pure peace and joy. And our home too when we follow in their footsteps and also leave this world.

Thank you for teaching me there is more to life than this world. How can this world be my everything without you in it my precious son? See you soon Saqib, my second born, my shining star.

As told by mum Natalie:

Harris was diagnosed with Hepatoblastoma (liver cancer) at 9 months old in July 2022. We had absolutely no idea and only found out because he developed a sore throat upon returning from a family holiday to Greece.

We attended an out of hours appointment on the Saturday at Preston hospital and explained we were concerned by his reduced appetite, bloated tummy and seemingly sore throat.

Our suspicions were confirmed, Harris did have a throat infection, but unfortunately that wasn’t all we had to contend with; his blood results showed significantly elevated tumour markers and an ultrasound scan showed abnormalities in his liver.

We were transferred to RMCH the following day and over the course of the week he underwent MRI and CT scans, had a biopsy and was fitted with a central line.

We were told Harris would ultimately need a liver transplant for cure and also found that the tumour had spread to his lungs, making Harris ‘Very High Risk’.

We began the chemotherapy protocol and whilst Harris did respond to the treatment overall, his lungs didn’t clear after several rounds of chemotherapy, so in April 2023

Harris underwent two lung surgeries to enable a subsequent liver transplant. In June, he was fortunate enough to receive a donor liver and then completed his final course of chemotherapy in August (his 16th in total).

You never expect it will happen to you, but when you’re plunged into the oncology world of chaos and uncertainty, you end up on a ward in a hospital you’ve never been in, not knowing what you might need for the journey ahead. Receiving a Milly bag at this point is invaluable, it has everything you need to get you through the darkest and most chaotic first few days when your world has been turned upside down.

Our Milly bag has remained the emergency hospital bag, always packed ready to go, as you never know when a fever will creep up on you and you need to make the dash to A&E!

Matthew suddenly deteriorated in one weekend.  I had taken him to our local A&E on the Saturday and we had been sent home with antibiotics for an ear infection.

On Sunday morning I couldn’t wake him, and it was later we found out he was having back-to-back seizures.  We were rushed to hospital by ambulance back to A&E, and due to his presenting symptoms, he was scanned straight away. 

It was just a short time later that we were told Matthew had a brain tumour and that we would be going to The Royal Manchester Children’s Hospital straight away for emergency surgery.

However, when we arrived Matthew was so unstable that he the surgeons were not able to complete his operation and he was taken to the Paediatric ICU for 10 days, before he returned back to theatre to have his surgery completed.

Whilst Matthew was on PICU we were told that Matthew had a very rare cancer called ETMR – there was no specific treatment protocol but Matthew would need to start chemo as soon as he was well enough.  This turned out to be 2 weeks after his last surgery, and this was when we were moved to Ward 86.

After his first cycle of chemo Matthew’s oncologist showed us a research paper which confirmed the treatment, he was having wouldn’t provide him with long term survival.  The decision was made to stop the current treatment and instead Matthew had very high dose chemotherapy, a stem cell transplant and 30 sessions of proton beam therapy.

Matthew was coping extremely well with all this until he unexpectedly had a stroke in January of this year, for which he needed further surgery and a stay in the high dependency unit. 

There have been other admissions both during and after treatment but currently Matthew is doing really well.

He has had to learn to walk and talk again, and he had the needs of a new born baby. Most children diagnosed with ETMR will not survive past their 4^th birthday, Mathew starts school in September and we could not be prouder of him.

Thank you for what you do for oncology children and their families, Matthew’s rainbow blanket is a favourite of his and something that connects all these lovely children together.  His Milly Bag is a staple in our house, not just for hospital, but anytime we go away.

Matilda’s story as told by mum Beth:

My daughter Matilda was just 10 months old when she was diagnosed with a rare cancer called Retinoblastoma.

I first realised something wasn’t right when I noticed a glow in her left eye when she was about 3 months old, then I noticed her eye starting to turn to the side.

I kept taking her to the doctors only to be told that everything was completely normal. But I knew that it wasn’t, it was weird because I never in a million years thought it could be cancer, I just felt something wasn’t right,

We had an appointment in Manchester in March 2020, just as Covid hit, and we were told Matilda had retinoblastoma, a rare eye cancer that affects young children.

We were transferred to Ward 84 without any notice. We live in Preston and had nothing with us as we were not expecting to be admitted.

My mother-in-law had to drive all the way back to get us some belongings for our stay.

Then we were gifted a Milly Bag, which had absolutely everything we needed in it!

I was so grateful and cried when I was handed this. It was so thoughtful and really helped us throughout our cancer journey.

Matilda is now 4 years old and doing well. She still has her rainbow blanket as her comfort, and we cannot forget Ellie the elephant, who has also been her comfort throughout her journey and remains her comfort to this very day!

So many parents talk about doctor’s failings in diagnosing their children, education not only for parents but for our health care professionals is paramount, early diagnosis can mean better more positive outcomes for our children.

Mandy kindly shares her son Peter’s story:

“Our son, Peter, was diagnosed with Neuroblastoma in January 2019.

Prior to his diagnosis he was a fit, healthy, energetic eight year old, but in the month running up to his diagnosis, he started to complain of back ache.

We thought we had a rational explanation for it. He had been under the care of a podiatrist for tip-toe walking and then he broke his big toe playing football which forced him to walk on his heels.

The back ache began just after his toe healed up and we rationalised that it was due to him walking differently for two weeks. But the back ache persisted.

On Christmas Eve 2018, he was upset and couldn’t get to sleep because his back hurt and he had tingles running up and down his leg. The day after Boxing Day, he couldn’t keep up on a family walk. We took him to the GP that afternoon. Her words: ‘We don’t like to see back ache in young children’.

She made a referral for blood tests but gave us the green light to continue with a holiday to see family in Edinburgh for New Year.

We didn’t make it back home for the blood tests.

Peter’s symptoms escalated to wobbly walking, losing his balance and struggling to go up and down stairs. On New Year’s Eve 2018 we took him to my mum’s GP who immediately referred us to A&E.

There, Peter was seen by a registrar and then a consultant and then he was having an MRI, all in the space of two hours. It was incredibly scary.

When the news came that he had a growth in his chest, and that a small part of it was pressing on his spinal cord, and that he was being admitted to hospital, we didn’t know what to think.

No one said cancer at that stage.

Three days after being admitted, the part of the tumour pressing on Peter’s spine caused a spinal cord injury, leaving him with no sensation or movement below his chest.

He had an emergency operation to remove the bit of the tumour causing the compression and the next week or so was filled with intense physio and frequent testing to see if he would recover from the injury.

Finally, twelve days after being admitted, we received the good news that Peter’s condition was stable enough for him to move to Manchester Children’s Hospital, closer to home, but the devastating news that the growth was cancer.

Peter was transferred to Ward 84 at Manchester Children’s by ambulance on a Saturday in the middle of January 2019.

I remember feeling completely disorientated for the first couple of days: a new hospital, a new ward, new nurses, physios, doctors, consultants.

But I also remember one of the nurses bringing us our Milly Bag and being overwhelmed by the kindness and thought and care that had been put into it. It was a perfect mix of help and comfort.

Peter spent six months in hospital, unable to go home between chemo treatments because he was still having intensive rehabilitation for his spinal cord injury.

His Milly’s rainbow blanket and elephant stayed on his bed the whole time.

His Neuroblastoma was localised in his chest so his treatment was shorter than it might have been. He had chemo, surgery, radiotherapy and maintenance treatment finishing altogether in February 2020, eight months after coming home from hospital.

Unfortunately, the story didn’t end there. Peter relapsed in August 2020 with a tumour on his skull bone and this time the cancer had spread to his bone marrow and pelvis.

He spent a year going in and out of Ward 84 Day case for treatment, sometimes returning to Ward 84/86 for inpatient stays.

Our Milly Bag was exactly what we needed for hospital stays and the rainbow blanket and elephant went every time too.

Three years later, we have just had the amazing news this summer that the disease still visible on Peter’s scans is no longer active and he is effectively in remission again.

He is still on treatment for another six months and regular scans will continue for the foreseeable. He hasn’t fully recovered from the spinal cord injury but he has learned how to adapt to it and is as active and energetic as a full-time manual wheelchair user as he ever was before injury.

We go forwards with hope, knowing that future Neuroblastoma relapse is possible but thankful to be back in a place right now where Peter is healthy and well.

And we will always be thankful for the day we were handed our Milly’s bag, because it’s not just a bag, it is smiles and treats and help and comfort and, more than anything, a caring heart just at the moment you need it.”

To celebrate their first birthday, Form Barbers in Great Harwood decided they wanted to give back to their local community.

Staff decided to hold a raffle in aid of Milly’s Smiles to raise some money and also highlight the work that we do.

The team provided complementary food and drinks, along with a great DJ for the afternoon, which was very well attended. In total they raised an amazing amount of £792 !

A huge thank you to the amazing team at Form, they are genuinely kind and generous people, who have helped to make a difference to children newly diagnosed with a cancer related illness.

We wish them continued success with their amazing business.

On the 7th of May, LFP Civil and Environmental Engineering held a charity day at Victory park, the home of Chorley FC.

The day included 3 very competitive football matches with teams from LFP, Peel Sports Turf, Peel Pumps and a rest of the world team – consisting of players from CLP, Wardell Armstrong, Hilton Grand Vacations and Fox Brothers. Peel Pumps edged it in the final to beat LFP to be the first holders of the ‘Graham Eckersley Trophy’.

Alongside the football there were several activities such as a raffle, an auction, inflatables, cake sales, donut sales and much more.

The day was very successful and helped raise just over £9,000 for several charities; Milly’s Smiles was fortunate to be one of the chosen charities, and we received an amazing amount of £1,000!

A massive thank you to Matt who organised the whole event, choosing Milly’s Smiles after his daughter Camille received one of our Milly Bags earlier this year.

We appreciate the support so much, it will allow us to continue supporting children and families newly diagnosed with a cancer related illness.

Our fabulous delivery team Graeme and John had a good trip over to Leeds Children’s Hospital this week where they safely handed over 20 Milly Bags to Ward L31, 32 and 33.

Thankfully the sun shone for their journey over the Pennines and they were as always, greeted with smiles from the lovely ward team.

It is always an honour to be able to support families at the point of diagnosis and subsequent admission into the wards and we never take this privilege for granted.

On arriving back in Lancashire we received this beautiful smiley photo of a young man currently being treated on L31, his mum told me “Me and my son are in here at the moment he’s on the cancer ward and we couldn’t be more thankful for one of your bags a few weeks ago . It helped us and he loves the blanket and the hat ! Thank you !!!”

Thank you to everyone who continues to support us tirelessly and to all our volunteers you are simply awesome!