Sienna Grace Gibson diagnosed with SMA Type 1
Hi our names are Jack and Sian, Sienna’s parents.
This is just a Brief summary of our journey so far.
Sienna has had such a rough start at life with physical difficulties to reach her milestones within the first 6 months, firstly starting off with what we thought was colic but turned out to be severe silent reflux after trying to tackle these issues we found out she had a tongue tie which the doctors disagreed to her having one, we decided to pay for private health care to have this sorted, after having her little procedure the GP’s finally had confirmation that we were right all along and that she did infact have a severe tongue tie which was causing her a lot of distress in feeding such as clicking and dribbling.
After going private the chiropractor who we went to see mentioned Sienna had low muscle tone, which we flagged with the GP’s and referrals were made but we had to wait a number of weeks for this neurologist appointment and again, we pushed for SMA testing due to a family member having this ( low muscle tone is a huge sign) and we were told to wait until 12th May for her neurologist appointment. Due to going private and a numerous amount of trips back and forth and the procedure we spent around £2,000 of our own money.
Sienna has tackled so much and dealt with so much pain and frustration, she has had difficulties thrown at her she still proceeds to smile every single day.
When we finally thought that we had sussed the reflux, Sienna began coughing and choking, a family member who’s little girl was in the neonatal unit at James Cook addressed Sienna’s issues to her speech and language therapist and the lady called us within a day and arranged a visit the day following day, she flagged concerns so we were admitted to James Cook for chest X-rays and bloods and MRI scans.
A couple days later we got the worst possible news, Sienna’s genetic bloods came back with SMA type one (spinal muscular atrophy). Type 1 is the severest form of SMA in babies 0-6 months, the possibility of sienna ever been able to walk or crawl is slim and there can be a life expectancy of 24 months for children untreated.
After days of blood tests and talks with doctors and consultants and days in hospital we are having to go to Newcastle Royal Victoria for bloods and other discussions and then we will be moved to Sheffield or Manchester hospital for her gene therapy treatment which means she will be in hospital for up to a month for treatment which costs the NHS £1.79 million for just one shot of treatment which can result in giving sienna a normal happy life with the chance of being able to walk and being able to sit up unaided.
We as parents in this difficult time with having to take all our time off work to support our little girl every day in hospital would appreciate any help what so ever, this would contribute to trips back and forth, hotel stays and giving Sienna everything she needs whilst we are unable to work.
As slightly mentioned above, the fund me is for help towards both parents not being able to work at the moment, our life’s have drastically changed meaning one of us will need to drop out of work full time to care for Sienna. This will result in claiming for disability living allowance and carers allowance, right now with the price of living going up and us as parents being un able to work and also having a lot of time off massively impacts our financial situation and mental health.
Thank you so much for taking your time to read this. Anything at all helps, we just want to make sure our little girl has everything she possibly needs, we have to give her the best life possible whilst we still have her here
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