Lucy is 5.

Lucy loves her hair. 👩🏻‍🦰 She loves it more than anything.   

Lucy also knows that children get poorly and lose their hair. 

She is going to donate her mop of red hair to https://www.littleprincesses.org.uk 👑 so that it can be made into a wig for another child. 

So why not raise money for this awesome cause? 

One reason.... 

A special little girl we know. She has an ETMR (Embryonal tumours with multilayered rosettes). 

Here is her story  https://eloisezoe.com 

I urge you to have a read. It is the brave and courageous journey that Eloise Zoe is on right now. She has just turned 2. 

What the heck?

Embryonal Tumours with Multilayered Rosettes (ETMR)

Embryonal Tumours with Multilayered Rosettes are very aggressive tumours that usually form in the largest part of the brain, the cerebrum.These tumours develop from embryonic cells that remain in the brain after the child has been born and are the rarest of infant and childhood brain tumours with the lowest survival rate. 

• Usually Grade IV.
• Typically occurs in the cerebrum but can be found in the brainstem or spinal cord.
• Accounts for just 2% of paediatric brain tumours. 
• Develops in infants and children under four years of age.
• Existing treatments include surgery, chemotherapy, radiation.

ETMR Symptoms

• Muscular weakness or partial paralysis of facial muscles or one side of the body.
• Loss of balance, trouble walking, lack of coordination, or slow speech.
• Seizures Headaches, particularly in the morning or that subside after vomiting. 
• Nausea and vomiting. 
• Unusual sleepiness or change in energy level. 
• Double vision or other eye problems. 
• Changes in behaviour or personality, irritability, aggravation, anxiety.

ETMR Treatments

Surgery: Typically, surgery to remove, partially remove or biopsy the tumour is the first course of action for ETMR.

Chemotherapy: Chemotherapy is usually recommended after surgery to target any remaining cancer cells.

Radiation: Radiation is often one of the most effective treatments for children with ETMR. However, radiation can also have long-term devastating effects on the developing brain, so physicians will consider the patient’s age, the location of the tumour and the tumour type before determining to use radiation as a treatment option.

An ETMR is very rare. 

Families are having to travel to America for treatment (if even viable to do so) this shouldn't need to happen. More research needs to happen!  

The current treatment available isn't a guarantee of survival, the rate is low. (That’s probably one of the hardest things I've ever had to type.) 

I'm lucky, all we are doing is setting up a fundraising page and going for a haircut. Families are living with this with little known about it. 

Solving Kids Cancer is starting research into ETMR's. It is so rare that there isn't a specific charity for it. Here is some more information on the research. https://solvingkidscancer.org/skc-funded-projects/

Thanks for taking the time to visit my JustGiving page. 

Donating through JustGiving is simple, fast, and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So, it's the most efficient way to donate - saving time and cutting costs for the charity.