Help Lillie to live her life to her fullest!

Hi were Zoe & Daniel, parents of Lillie Mae who is 3 years old. Lillie Mae is our little warrior princess who's been on more of a journey in her short 3 years than some fully grown adults.

*A little history*

Lillie Mae was born prematurely at 36 weeks. A very quite and sleepy baby - perfect! However, at just 4 weeks old we learnt that

this wasnt just 'perfect baby' behaviour and infact she was very unwell - in heart failure with 2 large holes in her heart. She was immediatly admitted to hospital where we spent the next month and underwent open Heart surgery to save her life!

Lillie Mae fought through her Surgery and came out the other side with her brand new Warrior Zipper Scar to show the battle she had won!

Unfortunately, for Lillie Mae her journey did not end here. She went onto be diagnosed with Dysphagia (an issue which makes swallowing unthickened liquids and some foods unsafe). She had a stroke in August of 2020 at just 6 months old and then was diagnosed just one month later with a very rare Genetic condition affecting only 3000 people world wide - Phelan Mc Dermid Syndrome.

This diagnosis for Lillie Mae means she is currently non-verbal, has global developmental delay and experiences many other medical conditions and difficulties including with her balance, coordination and muscle tone. This condition will affect her for her entire life during which she will require 24 hour care.

The future for Lillie Mae is uncertain. No two individual with PMS are the same. The Syndrome also presents with 'regression' (the loss of skills) and so it is extremely important that we work super hard to provide her with regular therapy both in the community and at home in order to support her and to hold onto these skills as long as possible. This is such a scary prospect for us as her parents to comprehend let alone for her older siblings who are her absolute best friends in the entire world.

The Warrior Princess herself:

Despite the battles Lillie Mae faces she continues to soldier on through life meeting every hurdle with braveness, strength and her infectious smile.

Lillie Mae is always full of energy (we call her 'Hurricane Lillie') - she keeps us on our toes. She loves climbing, spinning and crashing on anything and everything. She loves books and nursery rhymes particularly those with actions or makaton signing in them.

Lillie Maes current needs:

However, to ensure that Lillie Mae is kept safe and well and for her to continue to live life to her fullest potential she requires lots of input, equipment and adaptations to her environment. The NHS do they're best to assist with enabling this however they do not have an endless supply of money and the cost of many of the things that Lillie Mae has needed or does need now has cost us an awful lot.

Lillie Mae currently needs a disability pushchair with better support and mostly with the recline function to better meet her needs resulting from the fatigue that she experiences. This buggy costs £800-1000 and the NHS fund only £257 toward it.

She also needs a floor based padded bed frame to keep her safe at nighttime due to her sleep issues and the self-injurious behaviours that occur at night. These beds range also range from £600 right into the £1000s.

We also have a list of safety equipment that we have been advised to purchase by her Occupational therapists. These are things that are not provided by the NHS and therefore have to be self funded. Things such as enclosed socket covers, perspex TV screen protectors, cooker guards and so forth...

Sadly, we are struggling with the evercoming costs arising and so we have created this page to share Lillie Maes story and ask for your help and support if and where you can.

In the meantime, below is a link to Lillies Instagram page where we document and share her achievements (apologies its not as fab as other instragram pages but we aim to develop). http://Www.instagram.com/Lilliemae_warriorprincess

Thankyou all so much

Lots of Love

XXX