7-11, Sophia’s Birthday Fundraiser!

7-11, Sophia’s Birthday Fundraiser!

£11 for 11 years in 11 days!

7 years ago Sophia was heartbreakingly diagnosed with Sanfilippo Syndrome, (MPS 111A), yet today (5th Feb), is her 11th Birthday and we choose to celebrate life and celebrate Sophia.

It has been another challenging year living with Sanfilippo and watching it take a grip of our beautiful daughter, this week has been particularly bruising as we have to make some very difficult decisions. Yet here we are here smiling, dancing and never giving up!

Therefore we have decided to hold a Birthday Fundraiser for the third year in a row as we get so many questions about what people could get Sophia, how can they help or where can they donate, hence this year for her 11th Birthday we aim to raise £1,100 in 11 days and ask that you help us celebrate a very special little girl who despite everything she faces has the biggest zest for life, a beautiful soul and the biggest smile that warms your heart.

This dreadful condition has robbed us of many things, but we cherish every moment we have and are blessed to have been given the opportunity to raise and look after this wonderful little girl. Now we look forward to a fun and loving weekend with friends and family x

Feel free to donate or even post a little Birthday message as Sophia loves to see friendly faces xxx

Funds raised will be used to help us fight against this incurable and progressive illness whilst we also try and provide the best life possible for Sophia. We realise how fortunate we are to have the full support of all of you in Team Sophia and we like to try help others that have helped us, therefore this year we shall also be making a donation to Sophia’s School, Kelbourne Park Primary, without whom we would be lost.

When you are facing something so challenging as Sanfilippo and you have all of the worries in the world it is a wonderful feeling to know that there is a place for Sophia to go where she is loved, welcomed, entertained, developed and cared for.

This can be a very isolating and lonely life as you watch those around about you continue on life’s normal trajectory so again, we appreciate how much Kelbourne does not just for Sophia but to provide us with respite in the knowledge that she is safe and happy.

Sophia spends time doing crafts, sensory, music, mental stimulation, playing and in particular outdoor learning. Therefore, we would like our donation to the school to be used towards further enhancing their outdoor facilities.

We really want to send a heartfelt message of love and thanks to the wonderful team at Kelbourne for which we will be forever grateful, it takes a special kind of person to commit themselves to a profession in special needs and this school is blessed to have many of them.

Big Love,

Darren, Amanda, Sophia

(& the new addition, Rocco the puppy)

xxxx

#curesanfilippo #teamsophia #nevergiveup #together