{This is my only official fundraising page for Macey-Mai}

Updated.

(Goal in needed donations updated on October 2026, donations raised stood at £34,000 when our goal was updated. Next needed goal in donations £55,000, leaving £21,000 needed to be raised.)

When Macey-Mai was born on May 7th 2025 I created this GoFundMe a few weeks later to help cover the cost of travel expenses to medical appointments 240 miles from our home, accommodation expenses and also anything needed for Macey-Mai’s essential care for her complex medical needs at home and while away in London at hospital appointments. 

There has been a few changes in my little girls medical care plans since i ordinarily made this GoFundMe so I have updated it all below.

Hello, My name is Katelyn Im 24 years old and im a mum to three beautiful children. 

My youngest child Macey-Mai was born on May 7th 2025 with a really rare skin condition called Giant Congenital Melanocytic Nevus with her largest Nevus covering her entire back and sides with another large sized Nevus on her head and also over 100 satellite nevi all over her entire body of all different sizes, CMN only affects 1 in every 20,000 babies worldwide with a CMN of hers location and size which is predicted to reach >60cm at adulthood only being seen in 1 in every 500,000 births worldwide. 

Congenital Melanocytic Nevi (CMN) are most usually caused by a spontaneous genetic mutation that happens by chance while a baby is developing in the womb. It is not passed down from parents and cannot be prevented. 

CMN results from an abnormal overgrowth of melanocytes (the cells responsible for skin pigment) these genetic change usually happen between the 5th and 24th weeks of pregnancy.  

When Macey-Mai was born she had seven painful bleeding lesions on her giant CMN on her back which all grew very rapidly causing her a lot of extreme pain daily during this time Macey-Mai experience multiple infections within these areas meaning she needed to be on regular antibiotics for the first four months of her life.

Macey-Mai underwent surgery to have all seven lesions removed and each lesion was sent for a biopsy to check to see if a rare form of melanoma associated with her skin condition was present within any of them. Unfortunately after a long few months waiting for all the results we heartbreakingly received the terrifying news that one of these lesions did in fact show “highly aggressive signs of melanoma within it” (not the type we hear of older people getting from the sun UV) this type of (NRAS) melanoma is only seen in children with extensive/Giant CMN and is much more aggressive then your standard BRAF UV associated melanoma.

This type of melanoma is rare and also highly aggressive and spreads fast to nearby lymph nodes and organs.

A genetic test was performed on a lump removed from my daughter giant CMN in order to see which gene her CMN condition carried. 

Which led us to knowing the true complexity of our little girls rare case

Unfortunately knowing the complexity of my little girls CMN skin condition has only led our family to much more uncertainty and fear.

Most children born with CMN have a gene mutation in the NRAS gene alone and go on to live a completely healthy life.  

Unfortunately genetic testing has shown that isn’t the case for my sweet little girl. She was born with an “ultra rare” case of giant CMN with her genetics showing concurrent oncogenic somatic Co-mutations carrying gene mutations in}}

NRAS Gene + PIK3CA Gene  

Having both these concurrent oncogenic somatic Co-Mutations in CMN has only ever been scientifically documented in a small number of only five cases throughout the whole world in this entire lifetime. 

Thats how rare we’re taking.

Having these genetics together when seen in CMN can cause an increased risk for external and internal lumps to develop within my little girls body and at any given time with the potential risk of them being completely benign or for them to contain cancerous cells (NRAS Melanoma). 

Unfortunately this means for Macey-Mai that a purely happy, healthily life is pretty uncertain

95% of children born with CMN only have one single gene mutation responsible for the cause of there CMN skin condition. 

Because of this Macey-Mai CMN case is exceptionally rare! Making it even more medically complex than we first thought meaning skin checks are going to be needed regularly between both of my little girls specialist hospitals one being local to our home and the other being hundreds of miles from our home in London these appointments are needed to ensure if any new lumps or changes do appear within or on the surface of Macey-Mai’s CMN’s that they are promptly removed and biopsied to rule out any more potential cancerous tumours arising. 

Medical appointment have now become a lot more regular then they already were before due to the complexity of my little girls case, Being seen regularly between both her specialist hospitals every three months for check ups and any follow on tests or treatments that may be needed in the future. 

All donations will be used to help with  

  

•  All travel expenses for medical appointments in London at Evelina CH & Derriford hospital local to our home 
  

• Accommodation for medical appointments in London at Evelina CH   
  

•  Anything needed for Macey-Mai’s needs & her care at home at while away for medical appointments. 
  

• To be able to give Macey-Mai the opportunity to have amazing experiences in between all medical appointments (Making forever lasting memories together as a family).
  

Over the last year We’ve managed to raise over £30,000 which has helped massively to ensure we could get to continuous health care appointments in London for surgeries, scans, tests and so much more donations have also helped with the cost of trains/buses/taxis/tubes and hotel stays all while in London for hospital appointments as well as absolutely anything needed for Macey-Mai’s care. 

Since finding out the complexities of Macey-Mai’s CMN case financially everything has become a whole lot tougher on our family then they already were before with us now having even more regular medical appointments between two different hospitals one local to our home and one over 250 miles away from our home for check ups, test, scans, surgeries and treatments when needed. 

As well as the costs for travel expenses and accommodation expenses. 

On top of anything needed to be purchased for Macey-Mai’s daily complex medical needs. 

And needed essentials for Macey-Mai at home or while travelling 250 miles to her specialist hospital in London. 

As well as trying to afford to be able to give my little girl the amazing life experiences that she truly deserves most. 

Since I made Macey-Mai’s GoFundMe back in June 2025 we have so far exhausted close to £30,000 in expenses already. 

With medical appointments in London costing close to £1,000 each time once I add together the cost for both myself and Macey-Mai’s dads train tickets, tube fair and taxi, accommodation and essential like food etc. 

We do receive a refund of only ONE parents train ticket cost under the nhs health care travel cost scheme (HCTSC) due to being on low income and not being able to work with Macey-Mai’s complex medical needs and her needing me 24/7 but this refund only covers a small percentage of less than £200 compared to the close to £1,000 thats needed to be spent out in total per appointment once I add together the seconds parents travels expenses, accommodation and essentials needed on top. 

It is physically impossible for me to travel hundreds of miles via trains, tubes and taxis on my own all while pushing a pram and carrying needed essentials for over night stays, having the support from your donations helps ensure I never have to travel alone or be left to struggle alone, they ensure we always have somewhere to stay overnight in London for medical appointments as well as ensuring every essential Macey-Mai needs can be afforded. 

I recently made a new goal on Macey-Mai’s GoFundMe of £55,000. 

Donations raised at the time of me doing this stood at £34,000. 

New goal made (October 2026) 

 

Over the last 18 months, We’ve already exhausted close to £30,000 with approximately 14 appointments so far needing to be spent out for in London costing close to £1,000 a time along with multiple appointments at our local hospital costing quite a bit in taxi fairs to, along with every single essential needed to be spent out on that Macey-Mai has needed over the last 18 months of her life (which has been a lot!) 

Please if you can leave a contribution towards being able to raise our next goal in needed funds to able to afford everything up coming medical appointment and essential my little girl desperately needs and deserve every £ helps massively.

All donations go an incredibly long way in helping my sweet little girl and our family. 

Thank you for your continued support ✨