download (3)My husband and I are thrilled to announce that through Frankie’s Legacy we have exceeded our target of £1000 raised for the Cleft Lip & Palate Association Charity, with the total raised being £1057.62.  We are so pleased with this, especially as we were fundraising for CLAPA over Christmas and New Year and cannot thank everyone enough who donated to us either via our Just Giving page, through our funeral directors AV Band in Worcester or directly to us.  This amount will go a long way at CLAPA and will fund 9-10 4D scans for parents who have had a diagnosis of cleft lip and palate in their unborn babies.  We found that our 4D scan that CLAPA funded for us helped us immensely when Frankie had his diagnosis of cleft lip and palate, along with all their help and support.

I’m going to keep the Just Giving fundraising page open until Tuesday at 10.00am, when it will be closed.  But our fundraising journey is not over, not by a long shot.  Next week we will launch our next fundraising campaign through our new small charity “Frankie’s Legacy”, which exists to raise funds and awareness of cleft lip/palate, stillbirth and chromosome 15 duplication syndrome.  More information about the charity, and our charitable aims, can be found on

Before we close off the Just Giving page, there is still time to donate if you specifically would like to donate to the Cleft Lip & Palate Association charity. Please visit to make a donation.

Our next goal will be to raise £5,000 or just over by the end of August this year, so that Frankie’s Legacy can be officially registered as a charity with the Charity Commission.  If we reach this goal in September this money will be split between either SANDS or Towards Together Tomorrow (stillbirth charities) and the genetics department at Birmingham Women’s Hospital, with the provision that the money we donate goes exclusively towards a research project on Chromosome 15 Duplication Syndrome.  Then this year 3 areas that are very close to our hearts will have had financial support and some awareness raising activities which will continue into next year, and beyond.

I have a lot to do in the coming months to get Frankie’s Legacy as  charity off the ground, so after next Tuesday I will be asking for donations to Frankie’s Legacy via a paypal account for the charity, or via cheque made payable to Frankie’s Legacy or cash donations.  I’ll post a fuller update on how to donate to Frankie’s Legacy after next week.  I will also be arranging some fundraising events, asking for sponsorship, looking for volunteers and people to be involved in the charity and on our Board of Trustees.

My husband and I may not have Frankie, but we want his existence to mean something, and for his memory and legacy to live on.  Thank you to everyone who has helped make this a reality for us.

Love and light always,

Lisa & Russell Ventura (Frankie’s parents) xxx