Beautiful Harpers journey with SMA type 2

Hi I’m Mia, mum of Harper and This is Harper Sol. My love, my whole reason.

we are based in ramsgate, Kent.

for the last year Clayton and I have been fighting for answers for Harper, to be seen and listened to and for somebody to tell me what’s going on and why doesn’t she do things like other children.

Sunday 23rd June, our whole lives were turned upside down. Harper was diagnosed with SMA type 2, spinal muscular atrophy. A rare genetic neurological muscular disease that falls under the Motor Neurone Disease bracket. This disease is extremely progressive. Typically children and babies with SMA lose rapid motor control and end up with progressive scoliosis, intercostal muscle weakness and restrictive lung disease.

In 2016 a “miracle drug” called Spinraza was brought to the world after clinical trials and extensive testing. And it hasn’t been on the NHS for very long. It is the most expensive treatment in the UK today. I’ve never felt more lucky to have the NHS than I do right now. The drug, administered by a lumber puncture puts the SMN1 protein back in harpers body to slow the progression of the disease down and help regain motor control. With extensive physio, Harper could regain some of the skills she has lost and live a long happy life.

Harper started treatment this week. She will have 3 more doses in the next 60 days, and then every 4 months for the rest of her life. Trust me, nobody prepares you for a near 2 year old having a lumber puncture. I am so proud and in awe of my daughter and how she has handled everything like a champ. She really is my inspiration. Harper will still require wheelchair use, aids and aggressive therapy but we will not give up on getting her to reach her full potential.

We would like to raise money together for the additional needs Harper will require through this journey. Like intense physio, equipment, mobility aids in the home and travel expenses for our hospital trips and stays. Due to Harpers diagnosis, I am unable to work and am dedicating every minute around the clock to our little girl.

Love you my little bug.