For the happiest girl in the world
Ryan's story isnt brief nor is it straight forward. She is 1 in a million with an illness that is so rare it doesn't even have a name yet.Auckland
Ryan is 14 months old, she has been in and out of hospital most of her life. She is the best tuakana to her baby sister Grey and a light in all of our lives.
From only 1 week old she began to get a rash on her face, numerous visits to the GP and all the medical professionals put it down to "just a hormone rash".. Until it spread to her arms and legs. Testing began straight away, blood tests, genetic testing and clinic visits. All ending nowhere - inconclusive.
At almost 5 months old Ryan developed a high fever, extreme lethargy, and appeared limp on one side, she was rushed to Starship. Doctors confirmed she had a large stroke on the right side of her brain which affected her ability to use her left limbs. An MRI proved she has narrow arteries in her brain. She is also battling other symptoms for a bunch of other unrelated illnesses, and abnormalities with her heart, liver and kidneys so the testing started again. A skin biopsy, liver biopsy, kidney biopsy, LP, ECG, MRI, CT, ultrasounds, bloods and bloods and more bloods all taken over the course of 6 weeks while we were in hospital with her. All getting sent overseas for genetic testing and big top table meetings and still nothing. Undiagnosed and feeling frustrated we wanted to take her home, she had recovered remarkably and had shown great progress for us to manage at home.
And so, a new routine of life started again for Ryan. Monday to Friday - daily doses of meds and home visits with community nurses and therapists aswell as regular visits in hospital. She regained alot of what she lost and showed us all how strong she really is. Months later she would have a repeat MRI to check those narrow arteries and have a portacath inserted to help with access. All went well, and a series of trial treatments for anti-inflammatory diseases started aswell as a plan to wean her off the high dose steroids that had been keeping everything stable.
At 10 months old, she had another stroke. This time affecting the left side of her brain. This one wasn't as big as her first but was alot harder for her to recover from. She had lost her ability to swallow safely and to speak. To us it felt like she had been pushed 10 steps back. She had to remain hospitalized for 2 weeks and have an NG tube inserted for feeding and meds. Having an NG tube in meant another change to her routine, constant tweaking with her fluid intake and the annoyance of having a tube coming out your nose and down your throat wasn't the greatest time for Ryan either. We became educated on this and decided that we would also manage this ourselves to keep her out of hospital. Like last time she proved her resilience and got off the tube within months. This was a huge success for us all and gave us feelings of normality again.
Then just last week we found out she had another stroke. This time was bigger than the last and has affected the back of her brain on both sides. Unlike her last 2 this one wasn't as noticeable, as this part of the brain controls her vision and hearing. Doctors have commented that she may not be able to see on her left side and ignores it like she had done with her left limbs. But because Ryan is so young and her brain is still developing it is unknown what can be recovered and what is lost.
Her MRI from this stroke has confirmed that those narrow arteries have gotten worse which increases her chances of having more strokes in the future. So far we've seen a pattern of her having one every 4-5 months. All of the teams at Starship have been actively working towards a positive outcome for Ryan but have been unsuccessful so far and everybody is already doing all that they can for her. There is hopes of her having a procedure in the future, it will create a new blood supply to the brain but with this runs alot of great risk and a chance of it not even working for her. There is also one last trial treatment to go and one last genetic test result to come back so we remain hopeful still.
This disease is just so relentless and rare that we as a whanau feel so helpless for our girl BUT through all of it Ryan has remained her happy self and to be honest this is all we have wanted for her. To see another day with her smiling is all that matters and we will do all we can to keep it that way. We know the future for Ryan is uncertain so we want to make the most out of everyday with her no matter what the outcome may be.
Blaire Williams' involvement (page creator)
We are Ryan's whanau and her voice
Use of funds
General living expenses
Loss of income
It was this time last month we told our baby girl that she could go if she wanted to, I've replayed our last moments with her over and over - sometimes feeling regretful and sometimes feeling relieved. I knew she always had a plan and we just had to go with it. When she left she broke our hearts and took irreplaceable pieces of them with her. Throughout this month we've just spent time trying to put them back together again little by little. We grieve for her, for the past we had, the present we have and the future we never got. We know that there will always be those pieces missing from the day she left, but when we think of her those pieces are there and our hearts are full again even if just for that moment. Missing her really is the hardest but loving her is still just as easy. She taught me so much.. Lessons unconditional and unexplainable. She showed me my own capabilities of being a mama, gave me a strength I've never known to accept life and all it's bounds and above all just to be happy. I am forever grateful for my baby girl and all that she is to us, god knows we miss her every second of every day ❤
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This page was created on 4 Dec 2019 and closes on 4 Dec 2020.