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✨ Macey-Mai’s GCMN medical expenses fundraiser ✨
0% complete
£33,948 raised of £55K
1.3K donations
{This is my only official fundraising page for Macey-Mai}
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 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.
With also a diagnosis of an extremely rare type of cancer associated with CMN (NRAS melanoma).
This rare type of melanoma is associated with the same genes responsible for Macey-Mai’s CMN skin condition the (NRAS + PIK3CA genes)
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 care at home and while away at hospital appointments.
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 contain this aggressive and deadly form of melanoma within it (not the type we hear of older people getting from the sun UV) this type of 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.
Macey-Mai’s giant CMN skin condition case is very rare and complex found to contain two Mosaicism genetic mutation variants within (NRAS + PIK3CA) unlike the usual single spontaneous genetic mutation that usually causes benign (harmless) giant CMNs most commonly found to hold just the NRAS gene.
95% of children born with CMN only have one single gene mutation responsible for the cause of there CMN skin condition.
It is extremely rare for both the NRAS and PIK3CA gene mutations to be involved from the embryonic stage like Macey-Mai’s has been. When an NRAS mutation is paired with a PIK3CA mutation, it activates two powerful cellular growth pathways simultaneously (the MAPK pathway and the PI3K/AKT pathway). In CMN related melanoma the dual activation of these pathways is known to create an aggressive environment. The tumor cells become highly resilient because if a treatment blocks one pathway, the cancer can use the second pathway to survive and continue growing.
Because of this Macey-Mai CMN case is exceptionally rare! Making it even more medically complex than we first thought this means Macey-Mai’s CMN does unfortunately carry multiple high risks which is most likely why she was physically born with a cancerous tumour which grew rapidly on her giant CMN from the day she was born. With a fault in the PIK3CA gene being present within her body which is a (major tumor-accelerating driver gene) along with a fault in the NRAS gene it is highly likely that CMN cells with these genetics present can and will cause frequent cancerous and non cancerous lumps to grow internally as well as externally on Macey-Mai’s CMN’s meaning skin checks are going to be needed regularly between all three of my little girls hospitals to ensure if any new lumps 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.
Medical appointment have now become a lot more regular then they already were before since Macey-Mai’s cancer diagnosis with Macey-Mai now not only being under Great Ormond Street hospital in London which is over 240 miles from our home but now also being under another hospital in London called Evelina London childrens hospital which is also around 250 miles from our home as well as also under a team of specialist at our local hospital Derriford meaning Macey-Mai is currently under three different hospitals all of which she is seen at regularly.
Since Macey-Mai’s cancer diagnosis the financial strain of affording all medical appointments expenses with having to afford the cost of travel, accommodation anything needed for Macey-Mai’s care as well as so much more is becoming a lot harder for our family, we desperately need your help to reach our goal in donations so that we haven’t got to worry about the financial pressures of regular medical appointments hundreds of miles from our home and anything Macey-Mai needs for her care.
All donations will be used to help with
- All travel expenses for medical appointments in London at GOSH & Evelina CH & Derriford hospital.
- Accommodation for medical appointments in London at both GOSH & 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 Macey-Mai’s cancer diagnosis 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 three different hospitals one local to our home and two over 240 miles away from our home for check ups, test, scans, surgeries and treatments when needed as well as appointments for physiotherapy sessions at our local hospital to, the costs for travel expenses and accommodation expenses on top of anything needed to be purchased for Macey-Mai’s care at home or while travelling 240 miles to her specialist hospitals in London as well as trying to afford to be able to give my little girl the amazing life experiences she truly deserves most are going to be massive, I find myself spending approximately £1000 a time when going to an appointment in London once the cost for travel, accommodation and anything Macey-Mai needs is all added up it really does mount up! Already having to afford £1000 every single time we’ve needed to go for any appointment in London so far has meant we’ve already exhausted so much in funds with needing to spend out on so many appointments already thats been needed for Macey-Mai’s medical care over the last 14 months for all her check ups tests scans and surgeries.
I have now made a new goal on Macey-Mai’s GoFundMe hopefully with the love and support from all our amazing community of supporters we’re hopefully be able to reach our next goal in needed funds to be able to ensure we can afford all upcoming medical appointments expenses or anything needed for Macey-Mai’s care going forward hopefully we can afford to give her some amazing days out in between all her medical appointments to so my little girl can enjoy being the happy little girl that she is while getting to experience amazing experiences while battling this extremely hard battle.
Im extremely grateful for all the shown support we have received over the last 14 months without your support we really couldn’t have gotten as far as we’ve managed to get today your donations, love and support is truly helping my little girl and our family more then you can ever imagine.
Please if you can contribute a donation to Macey-Mai’s GoFundMe no donations to small and all donations truly will go such a long way in helping my little girl and our family through the next part of my little girls cancer journey please help me to be able to afford my little girls medical expenses and to help give my little girl the life she so deserves most.
Thank you all so much!
If you can’t donate sharing my little girls GoFundMe page would also really help us massively. To everyone who’s donating I love you all ever so much I truly am so thankful for each and every one of you this journey has been extremely hard on me my little girl and our family having your support really is making a tremendous difference thank you all for everything. Katelyn Xx
Organizer
Katelyn Clarke
Organizer