Hadleigh Baptist Church Football Club

Lowestoft to Felixstowe Suffolk Coast Walk 60 miles. 17th – 19th May 2024.

Dan & Mark enjoy playing football every week with a likeminded bunch of lads. When we go to clubs, play sport we don’t always take the time to get to know people, what they do for a job, where they live and what life is like for them. I’m proud to say that we make sure we have social events aside from playing and we take time to get to know and support each other.

Dan and Mark although completely different stories both have had to deal with difficult stressful life experiences.

Dan’s daughter was born early at 29 weeks gestation and was then diagnosed with Crouzon syndrome leading to multiple major operations and is facing some major operations in the future.

Mark sadly lost his lovely wife, Niki to Cancer in 2023 and is now dealing with the grief and loss that this creates.

As a group we wanted to do a challenge to raise money for the Craniofacial Team At Great Ormond Street Hospital and Cancer Research

Craniofacial Team at Great Ormond Street: This money will go direct to the team and go towards developing new techniques for future generations of children who have Crouzon’s amongst other related syndromes and craniosynostosis.

Cancer Research: This will go towards research to find cures and drugs to fight cancer.

The total raised on this site will be split evenly between the two charities.

The Walk:

We will be walking the whole of the Suffolk Coast line which stretches 60 miles. This will consist of 3 stages of walking.

Lowestoft – Southwold 17th May

Southwold – Aldeburgh 18th May

Aldeburgh – Felixstowe 19th May

We decided to do a challenge close to home so we could get as many people involved as possible. I encourage you all to join in, walk every stage, walk one or two stages or become a member of the support team.

Please sign up to walk or support the challenge here: https://forms.office.com/e/eLuzpWPAYW

Jessica’s Story:

Jessica Rose Baker

Born on the 22nd September 2015 at 29 + 1 week’s gestation - 11 weeks early - weighing 2 lb.

Jessica wasn’t due until December, she spent just over 2 months on the neonatal ward at Ipswich Hospital and then was released under the home care team just before Christmas 2015.

Once home Jessica was diagnosed with Crouzon syndrome.

Crouzon Syndrome: is the premature fusion of the sutures (soft joins) in the skull and the under-development of the mid-face. The sutures in the head fuse too early meaning the head cannot grow normally and restricts the space the brain has; causing Brain damage and blindness if left un treated. Crouzon_syndrome_F1684_FINAL_Dec19.pdf (gosh.nhs.uk)

Jessica has had multiple major surgeries and procedures and has a multidisciplinary team that includes 10 different departments. Jessica’s major surgeries include:

Posterior vault expansion: This included cutting Jessica's skull from ear to ear and placing springs either side of her head. As the brain grows the springs expanded and over time the bone grew and filled the new gap. This surgery was completed at 18 months old.

Front Orbital: After noticing signs of pressure it was clear from a Intracranial Pressure monitor procedure Intracranial_pressure_monitoring_F0333_FINAL_Sep19.pdf (gosh.nhs.uk) Jessica needed more space for her brain. The front orbital was completed when Jessica was 5. This includes removing her forehead reshaping it and bringing it forward using medical bolts. Fronto_orbital_remodelling_F1725_FINAL_Sep19.pdf (gosh.nhs.uk)

Both are designed to give Jessica's brain the space it needs to grow and to protect her sight.

Jessica has to have regular surveillance to check for brain pressure and is now about to start the pathway for the a mid-facial advancement. Jessica will be part of the decision to have this operation. The frame is placed on her head with a series of metal wires which to tighten and pull forward daily. The bones in Jessica face will be cut to give the freedom of movement. This will take three months and will slowly pull Jessica’s face forward. This procedure has a multidiscipline team and Jessica will have many appointments before this goes ahead include weekly psychological appointments over an 18 month period. Having_a_red_frame_F1782_A5_col_FINAL_May15.pdf (gosh.nhs.uk)

Jessica has had other operations such as having her tonsils and adenoids removed – twice. These surgeries help create more space for Jessica's nasal passages and throat – for better breathing.

Jessica has multiple other conditions she deals with.

Hearing loss: Jess has hearing loss in her right ear and wears a hearing aid at all times

Vision Impairment: Due to pressure on her optic nerves, during times of elevated brain pressure, and also due to the very nature of her eyes being further forward (proptosis).

Chiari Malformation: This is where the lower part of the brain pushes down into the spinal canal. This is very low level for Jess thankfully. Chiari malformation - NHS (www.nhs.uk)

Severe obstruction sleep apnoea: Jessica stops breathing in her sleep, so she wears a CPAP machine at night to help her sleep and prevent apnoea events. Sleep apnoea - NHS (www.nhs.uk)

Jessica is a caring, brave soul, that has gumption in spades. She’s incredibly witty and a wonderful big sister to her brother Charlie. Jessica is kind and thoughtful, she is a popular member of her school and children enjoy spending time with her. Jessica has had far more life experience than any 8 year old should have, but this makes her incredibly noble and wise. She’s a voice of reason and fairness. Jessica is a joy to be around and we couldn’t be luckier to call her our daughter.

Niki’s Story:

To everyone who knew my darling Niki, this is the hardest thing to write, but I know Niki had lot of contacts and friends so it's the least I could do.

I met Niki in 1995 as a 15-year-old and knew that she was someone special, she had a gentle, compassionate and beautiful soul to her, she was also physically very beautiful.

Despite our ups and downs we remained together as lovers, friends and soul mates. We both supported one another, held each other, pushed each other on when it got difficult but most of all we found and shared a love of Jesus Christ our Lord and Saviour who has walked with us since we were saved 15 years ago.

Niki’s love was her art and sharing her love of God's creation, landscapes, animals amongst other things. She connected with people through her art. She loved to care for people and had a very tender heart.

I called her 'my chick' because she was very vulnerable, sensitive and you always needed to treat Niki with care and gentleness. That was something I loved about her and something I could do to care for Niki both as a husband, friend, lover and soul mate.

In March 2018 we received the shocking news that she developed breast cancer. Following surgery, chemo and radiotherapy she got the all clear the following year, but there was always the fear in the back of our minds that it could return. Niki hated her yearly mammogram but faced her fears bravely.

In 2022 I had the privilege to create her a dedicated studio space by converting our garage. Completed in December she so loved being in there. Of course, it was pink, her favourite colour.

In January 2023 she injured her back, and after a walking challenge in February was in pain and discomfort. We didn’t deal with it until seeing a physio in March. This helped for a bit but she was having continued pain in her back and neck. Also having acid reflux and dry mouth she stopped eating food in April. A blood test in early June revealed concerns on her blood count so she had a CT scan on 28th June. Then the dreaded call with the oncologist on 6th July 2023 revealed that the cancer had return, but this time it was her liver and bone marrow.

We arrived at hospital at 12midday on 6th July. I was by her side day and night with very little sleep for 21 days while the doctor’s consultants, nurses, and physios worked on her.

Further scans revealed a broken lower back and femur. The cancer had weakened her bones and she probably had these fractures for months, hence her discomfort. The biggest concern was her blood platelet count crashed and with no food she was too weak to start chemo. However, on 12th July she had a rod inserted into her left leg in an attempt to improve mobility and ease pain. However, she never regained her mobility and continued to grow weaker and weaker.

In the early hours of Friday 14th July, I was awoken at 3.45am to hear Niki in some sort of battle and in fear and anxious state. She was in a spiritual battle between the forces of good and evil. I know this as I had the same experience in 2010. Afterwards Niki said that the devil wanted to take her life there and then, but thanks to the blessings of almighty God she was delivered and was given the victorious image of the Lord Jesus on a white horse victorious in battle, which of course we believe is the case.

However, little to our knowledge this did not mean Niki will be healed. Despite many prayers. However, God's hand was at work all this time putting certain people in certain places at certain times.

We were moved to an open ward on 14th July which was a truly horrible and distressing experience for both of us.

Then in the morning of 25th July the oncologist came to see us and I could tell something was wrong. Niki still believed that she would get better and even asked me for a roast dinner.

I had a quiet word with the oncologist and realised that there was nothing more they could do as her body was not responding to treatment and was too weak. She had a matter of days to live.

Next the HCA said a side room was being made available and we moved at 3pm that same day.

The next day was a whirlwind and purely a miracle. I asked to see our pastor who visited us in the morning of Wednesday. We were chatting outside the ward and he mentioned about getting Niki home. The next moment the oncologist walked past. I called her over and asked for us to take Niki home. She was great and instructed a fast-track transfer. Despite access and logistical challenges, we arrived home at 6.30pm on Wednesday.

St Elizabeth hospice staff took care of Niki. In just over 24 hours of arriving home at 8pm on Thursday 27th July, my mother woke me up as Niki’s breathing had changed. I moved closer to her bedside and leaned over her to hear her take her last breath and hold her hand. At 8.05pm that evening Niki Louise Jackson was called home to be with her Lord and Saviour. Her passed away in her own home surrounded by family, friends and her doggies. It was as peaceful and as perfect as could be.

A light has been extinguished from this earth and a massive hole has been left in so many lives.

I plead with every one of you to know that Niki is alive in heaven walking with Jesus, she is no long in pain, discomfort, anxious, worried or distressed. She's in a better place of indescribable beauty and will be able to paint to her hearts content.

But it would be amiss of me to acknowledge our pain and grief. I am utterly crushed, devastated is not a strong enough word. Niki touched so many people with her beauty and tender spirit.

At this time we need to remember her life and her loving beauty.