Lilys Multiple Sclerosis Journey At Age 14

Hello, my name is Danielle I am the mother of an MS Warrior, Lily-Grace aged 14.

Lily was diagnosed in May 16th this year with multiple sclerosis. MS in children is extremely rare - with only 5000 children worldwide suffering from this. MS attacks the myelin sheath in the brain and spine, causing significant damage & lesions.

Lily has moments of severe nerve pain, migraines, extreme fatigue, mini seizures, trigeminal neuralgia, unsteadiness & falls, optical neuritis, pain, blanking out & confusion.

Lily has been in hospital for over 9 weeks in total since February this year undergoing numerous visits, MRIs & various tests trying to get answers & treatment that works.

In February this year Lily tried out for the top netball team in our area, as i was watching Lily play I could tell something wasn't right.

She actually made that team. It seems along time ago that she was able to even play sport.

Lily started complaining of constant headaches, I took her to the doctor & then the optometrist to check her eyes. We were referred to Perth Children’s Hospital. Lily had two MRIs on her 14th birthday followed by a Lumbar Puncture to sample her spinal fluid for suspected MS.

In medical terms

Lilys MRI results findings were T2/FLAIR high signal intensity foci involving the supratentorial frontotemporal lobes in a periventricular distribution with slight reduction in the degree of T2 signal intensity. They remain non enhancing. White matter focal hyperintensities on frontal cortex. Her operation report from the pinal fluid sample for MS investigation showed an entry level of 45 cm H20 the decreased to exit pressure of 25 cm H20.

In non-medical terms they found excess spinal fluid and lesions on her brain.

Lily requires significant care for the majority of the day.

Due to all of the above she is also having mobility issues and now uses a wheel chair for fatigue & to help prevent injury from falls & seizures.

(The seizures are still under investigation and review)

Lily started Tysabri July, this is MS disease modifying medication to help stop the progression of the disease.

We are non residents of Australia.

We have been living here since Lily was 5. Lily doesn’t meet the medical requirements to become an Australian citizen.

I am my daughters full time carer, I am her mum, her voice, her advocate.

This is a tough diagnosis for a young teen to have.

Her disease is demanding on my time & Lily is left not being able to make a full school day. I myself am needed at home most days as she has been so unwell.

Lily does the occasional half days at school when she able.

My hope for Lily is for her to gain her mobility back and hopefully the more monthly infusions she has (monthly for the rest of her life) start working.

Lily is not entitled to NDIS and I’m not entitled to get goverment assistance i.e a carers payment or allowence due to not being a resident.

I’ve lived off my savings since February when Lily initially became ill, I’m looking at my bank account getting quickly depleted.

- Rent ($620 a week)

- Food, Lily will need to follow an anti- inflammatory diet

- Medical bills

- Medications (one of lily’s medications alone costs $148 per month)

medications monthly are roughly $350

Lily requires regular physiotherapy, hydrotherapy, OT, oral health for her TMJ disorder, chiropractor, ophthalmologist and an endocrinologist and a carer.

I am asking for any help you can give, even if you can’t donate please share my darling girls story far and wide.

MS in children is not spoken about enough.

Donations will be used for income support so I can be there for my daughter’s day to day care to keep a roof over our heads, the power on and for lily’s optimal food, medications & travel to all appointments at Perth Children’s hospital. I’ve listed all the specialists that she is a patient of.

It’s hard to ask for help, however ego aside we're in desperate need of support at this time, I’m a solo mum of two.

Your support would help me continue to care & find the right treatment for my daughter.

It’s been heartbreaking and emotionally exhausting to see my intelligent, vibrant & sporty child face such a devastating neurological diagnosis.

Thanks for listening to our story.

Much love and I appreciate any support you can offer.

The MS Warrior Mum

Danielle