This is Harper Sol. My love, my whole reason.
As most of you are aware, 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.
Love you my little bug.
Reminiscing when I directed Guns Up for @badboychillercrew the most fun few days in Bradford - I really wanted to capture their life and Bradford for what it is, no glamour @daniel_lillie_dop on the camera as per, superstar. Enjoyed every moment of this! One day I’ll come back I promise
Nothing but beaming pride for this standing girl, this is modern medicine and pure hard work at physio. Genetically this shouldn’t be possible. Just a reminder we are still waiting on the decision from @nhsengland & NICE to approve the access to treatments for spinal muscular atrophy for all on the NHS. When harper was diagnosed we signed an MAA (managed access agreement) to treatment for a limited time with the hope it would be approved. We were supposed to hear back in November and we’re still waiting. I have nightmares and feel sick most of the time, I get through the day and it hits me like a ton of bricks because times I forget that her treatment could be possibly pulled away and life could look very different. I don’t really know where I’m going with this - but if anybody has some up there contacts within this committee board, tell them to hurry the fuck up as there’s some really anxious families waiting for a decision. Thanks
I need a holiday, this is when we were stuck in Thailand in lockdown 2020! I’d go back there in a heartbeat even with 40 degree heat and masks 😷 all shot on Nikon F100 on Portra 400
