Donation protected
As some of you may know my beautiful Macey-Mai Louise Anne Milne was born on the 07.05.2025 macey-Mai was born with a Giant congenital Melanocytic Nevus covering 100% of her back from her neck down, around the her sides of her stomach, on the top of her head on her bum and satellite ones all over her body.
A Giant congenital Melanocytic Nevus is a rare skin condition that only affects 1 in every 500,000 births, these types of birthmarks are present at birth and grow proportionately with the body. A GCMN is caused by an overgrowth of melanocytes pigment-producing cells in the skin.
GCMNs have an elevated risk of developing into malignant melanoma, a type of skin cancer if left untreated. They may also be associated with other conditions, such as Neurocutaneous melanosis where melanocytes grow in the brain and spinal cord. Macey mai has an MRI scan booked in for the 19.08.2025 to check her brain and spinal cord for this condition.
After being refused treatment for removal of Macy-May’s Giant Congenital Melanocytic Nevus by the NHS, i have chosen to seek private treatment for surgery to remove macey-mai’s Giant Congenital Melanocytic Nevus.
As this doesnt currently effect macey-mai’s health physically in the near future it will have an unimaginable effect physiologically on her mental wellbeing All macey mai can have done on the nhs is surgical removal of any growing nodules that form on macey-mais GCMN this would mean a lifetime of surgeries for macey mai due to her Nevus producing these growing nodules at a fast rate.
The nhs will only act once her Nevus starts to effect her health (once it becomes malignant) by then it could far to late for our sweet girl as melanoma can spread rapidly deeper within the Nevus, we truly cannot let it get to that we truly cannot let it get to that.
Macey-Mai spends most of her time uncomfortable and in pain due to how sensitive her Nevus is just her clothes rubbing on her back causes her Nevus to start to bleed as you can imagine not only is her Nevus extremely uncomfortable for her but in the near future it’s only going to effect her mental wellbeing unimaginably.
I have been having to travel 500 miles all round via public transport over the last 3 months spending almost £500 a time for macey mai to attend nhs appointments in London, during these appointments we have been told by professionals (at least you can cover her head with a hat and her back with a top) like these things will make living with my daughters serious condition any easier on her mental wellbeing. Let alone the struggles she is facing each and everyday due to how uncomfortably irritable her Nevus itself is.
Macey-mai is currently having to spend her days wearing an extremely sensitive skin dressing covered by Tubifast which covers her back and tummy this itself is extremely uncomfortable for macey-mai to have to go about her daily life living like, she has to be given medication for her pain every 4 hours continuously each and everyday.
Macey-mai is the most beautiful little girl who is loved unconditionally. We wouldn’t change her one bit but it is extremely important to have her GCMN removed before she starts school.
Macey-mai will have to undergo a number of private separate surgeries over a period of time, starting off with tissue expansion, which involves inserting a tissue expander under the skin to stretch surrounding skin, which is then used to cover the area where her Nevus is after excision of her GCMN.
For all surgical procedures travel expenses and so on, we need to raise around the total of £40,000, any money raised above the amount needed for Macey-Mai’s treatment will be donated to a CMN charity.
I would be hugely thankful for any donations that are going to change my daughter’s life.
Thank you Katelyn mai’s mum x
A Giant congenital Melanocytic Nevus is a rare skin condition that only affects 1 in every 500,000 births, these types of birthmarks are present at birth and grow proportionately with the body. A GCMN is caused by an overgrowth of melanocytes pigment-producing cells in the skin.
GCMNs have an elevated risk of developing into malignant melanoma, a type of skin cancer if left untreated. They may also be associated with other conditions, such as Neurocutaneous melanosis where melanocytes grow in the brain and spinal cord. Macey mai has an MRI scan booked in for the 19.08.2025 to check her brain and spinal cord for this condition.
After being refused treatment for removal of Macy-May’s Giant Congenital Melanocytic Nevus by the NHS, i have chosen to seek private treatment for surgery to remove macey-mai’s Giant Congenital Melanocytic Nevus.
As this doesnt currently effect macey-mai’s health physically in the near future it will have an unimaginable effect physiologically on her mental wellbeing All macey mai can have done on the nhs is surgical removal of any growing nodules that form on macey-mais GCMN this would mean a lifetime of surgeries for macey mai due to her Nevus producing these growing nodules at a fast rate.
The nhs will only act once her Nevus starts to effect her health (once it becomes malignant) by then it could far to late for our sweet girl as melanoma can spread rapidly deeper within the Nevus, we truly cannot let it get to that we truly cannot let it get to that.
Macey-Mai spends most of her time uncomfortable and in pain due to how sensitive her Nevus is just her clothes rubbing on her back causes her Nevus to start to bleed as you can imagine not only is her Nevus extremely uncomfortable for her but in the near future it’s only going to effect her mental wellbeing unimaginably.
I have been having to travel 500 miles all round via public transport over the last 3 months spending almost £500 a time for macey mai to attend nhs appointments in London, during these appointments we have been told by professionals (at least you can cover her head with a hat and her back with a top) like these things will make living with my daughters serious condition any easier on her mental wellbeing. Let alone the struggles she is facing each and everyday due to how uncomfortably irritable her Nevus itself is.
Macey-mai is currently having to spend her days wearing an extremely sensitive skin dressing covered by Tubifast which covers her back and tummy this itself is extremely uncomfortable for macey-mai to have to go about her daily life living like, she has to be given medication for her pain every 4 hours continuously each and everyday.
Macey-mai is the most beautiful little girl who is loved unconditionally. We wouldn’t change her one bit but it is extremely important to have her GCMN removed before she starts school.
Macey-mai will have to undergo a number of private separate surgeries over a period of time, starting off with tissue expansion, which involves inserting a tissue expander under the skin to stretch surrounding skin, which is then used to cover the area where her Nevus is after excision of her GCMN.
For all surgical procedures travel expenses and so on, we need to raise around the total of £40,000, any money raised above the amount needed for Macey-Mai’s treatment will be donated to a CMN charity.
I would be hugely thankful for any donations that are going to change my daughter’s life.
Thank you Katelyn mai’s mum x
Organizer
Katelyn Clarke
Organizer