March for Minnie

The reason we are doing this, please read.

Minnie is a complex medical child to say the very least. She’s had one hell of a journey, and is classed as ‘terminally unwell’; she receives palliative care. Despite this she puts up one hell of a fight and is the ULTIMATE little warrior!
She’s been an absolute pickle (of the cutest kind!) since birth, arriving 9 1/2 weeks early on the bathroom floor..! Daddy resuscitated her tiny little body until the ambulances arrived 17 minutes later..
Minnie was very very unwell (unbeknown to us..). She was rushed to Southampton hospital for specialist treatment, where it was very touch and go for months down there. Awful.
Minnie was diagnosed with a rare and severe form of congenital heart disease- Ebsteins anomaly. She has a severely displaced tricuspid valve, enlargement of the right ventricle, a huge ASD (hole in heart), right-to-left shunting (oxygenated & deoxygenated blood leaking back and forth the upper 2 chambers of heart), regurgitation in both tricuspid and mitral valves. As such, she is immensely and consistently breathless and cyanosed (purple) due to her oxygen levels sitting dangerously low at 75-85%. She has constant fatigue (although you wouldn’t always know it!) and is very restricted in physical activity.
Unfortunately Minnie is so severe that she has a hypoplastic right ventricle and is classed as a single ventricle patient (half-a-heart). Her treatment options are very limited and we are frequently told that she will *never* be in a state of repair.
Minnie’s problems are not restricted to heart. She also has respiratory issues- pulmonary hypertension in her lungs due to the high pressures in her chest. For which she takes Sildenafil.
Minnie has been NG tube fed since birth as she was too fatigued to feed, which resulted in major food aversion. She has GORD and her feeding/ weight loss has dominated our entire existence! She now enjoys the foods she likes but is still PEG fed through a button (device which sits in her tummy allowing us to pump calories/ fluid directly into her stomach) via a pump with extra calorie prescription feed 3x a day. She is constantly losing weight due to how hard her heart works. She needs to be 20kg for her next open heart surgery but it’s a raging nightmare getting her there 🤦‍♀️
Minnie uses a wheelchair for any distance walking due to her extreme breathlessness, fatigue and cyanosis. She also has home oxygen for periods of desaturation.
Minnie’s had 8 operations to date and is a frequent visitor to hospital (with any illness) as she has 0 reserves. She has open access to our local ward where she is very, very well known..! She has an array of weekly appointments spanning all over the place! Her community nurses (Snowdrop trust) visit every 2 weeks to check her levels of heart failure/ oxygen saturations/ HR/ weight. She is also a Chestnut Treehouse patient and receives respite care.
In light of all of this, she is THE strongest, THE sweetest, and THE most determined little girl we know! She loves everything that life has to offer and absolutely focuses on what she can do as opposed to what she can’t. She will NOT let CHD stop her.. LOVE her so much ❤️

The top UK cardiologists say that Minnie is irreparable, but hope emerges. The very doctor responsible for inventing the intricate 'Cone Procedure' operation that Minnie urgently needs—Dr. Da Silva—has agreed to take on Minnie's case!!! This is huge news the whole family has been waiting for! It’s a final beacon of hope for our precious girl to give her the best chance of life!!

Being in America this surgery of course requires funding. Minnie’s fought SO very hard to get to this point, as have we! We are here asking for your help in supporting beautiful Minnie to raise £140,000 to cover the cost of flying to America on a medical flight, surgery, and 11 days as an inpatient. (Additional hospital days are charged at an extra £6,000 per day!)

We thank you from the depths of our hearts, for joining us in the mission to extend our Minnie's precious time.

We couldn’t be more grateful for any contribution!