Faith's Wish to Walk
Faith's Wish to Walk - Help Faith to have the life changing surgery that will give her a chance to walkAuckland
My name is Faith. I am a happy, friendly, cheeky beautiful and very determined little 4-year-old girl who loves to sing songs and say “Hi” to people.
I was born prematurely at 29 weeks weighing 1.345kg, due to birth complications I was immediately placed in the incubator and rushed off to the Special Care Unit, that became my first home for the next three and half months. On the third week, mummy and daddy were called into the kind paediatrician’s office. They were then told the bad news that turned their world upside down.
I have been diagnosed with something called Periventricular Leukomalcia (PVL), a form of brain injury that the brain cell died off due to unstable blood pressures at birth
As I grew older, I started to miss the key milestones as a baby then as a toddler. At two years old, I was diagnosed with Spastic Quadriplegic Cerebral Palsy. The Spastic Quadriplegic Cerebral Palsy causes stiffness, spasticity in my hands, arms and legs, making balancing, walking and sitting really difficult. Simple movements are a major challenge for me, my body is often in pain. Every night my sleep is disrupted, and I tired easily. Over time spasticity will cause my muscles to get tighter and tighter. Eventually tendons will shorten and I will begin to lose my mobility.
Through lots of tears, my strong mummy and daddy did not give up on me. With the grace and love of God, and huge support from family and friends, I started my therapy journey.
My daily life now revolves around therapy; Conductive Education, physiotherapy, intensive therapy, speech and language therapy, music sessions, hydrotherapy and acupuncture. I practice walking in my walker and or stand in my standing frame at every opportunity I get. I do physio exercises at home every day, even when the days are long and tiring. I continue to improve, but to achieve control over my movements and to progress to the next level, I need surgery to eliminate the spasticity which dominates my body.
My mummy and daddy did A LOT of research last year, we came across a life changing surgery known as “SDR”. (Selective Dorsal Rhizotomy) in St Louis Children's Hospital. This spinal surgery is performed on the lower part of the spinal cord by severing abnormal nerves to reduce the spasticity in the body. This surgery will allow me to gain the ability to be more independent, moving in and out of positions without spasticity and pain. I will have better control of my body, be more comfortable and in less pain. I will have a chance to have a better quality of life, a chance to walk, run, jump and play at eye level with my brother and my friends.
Because this surgery is not funded by the NZ health system, we are aiming to raise $150,000 dollars in next two years to cover the cost of SDR surgery, the post-operation rehabilitation, and 6 weeks of accommodation and flight to America. In addition, any surplus funds will go towards non-funded post-operation intensive therapy needed in NZ.
Please donate to help me and my family. Spread the word, like and share our page at https://www.facebook.com/Faiths-Wish-to-Walk-243960696506197/ . From the bottom of our heart, we are very grateful and appreciate for your help and donation. Thank you again for making my family’s dream comes true and helping to change my life!
God bless you and all your love ones.
Jessica Seo's involvement (page creator)
Mother of Faith Yu-Na Seo
Use of funds
The fund will contribute towards Faith's Selective Dorsal Rhizotomy surgery and post-operation rehabilitation, 6 weeks of accommodation and flight. Surplus fund will go towards non-funded intensive physiotherapy in NZ.
Other page links
Arohanui and hello to all our friends and supporters,
It has been a while since I have updated you all of Faith's surgery.
Firstly we want to say thank you to you all, for patiently waiting with us on the news of her SDR surgery, and again, thank you for your continuing prayers for her healing.
We have been spinning around for the past month or so. While New Zealand is under level one lockdown, we were able to catch up on many appointments and meet with medical experts who look after Faith. Mummy is back as the "chauffeur" taking Faith and Nathan back to school/therapies, helping Nathan with his homework, and doing exercises with Faith. Once lockdown has eased, we took some time out to look after our parents, so life in our household is always on the go.
Our thoughts are never far from Faith's surgery. In my spare time, I watched a lot of news, such as New Zealand local news, BBC, NBC, as well as St Louis local news. We faced new challenges, while COVID 19 pandemic is gripping the world.
Currently, these are some questions which we are facing, and we are yet to find all the answers:
# Finding medical insurance that will cover us for our travels. New Zealand government has issued advice regarding the avoidance of unnecessary oversea trips. This advice impacted on what travel insurance covers (COVID 19 is not covered). It has also restricted flight schedules and tightened border control. A month ago, Air NZ announced flights to St Louis are available as early as September 1st; however, this has been pushed back to October.
# Travel safety. Major transit points on the West Coast of America to St Louis have newly confirmed COVID 19 cases daily. Masks are mandatory in many states, while other states have no such requirement. We hope the use of masks will reduce the risk soon.
# Date for SDR Surgery.
We have been communicating via email with Dr Park's team. In our last email, they have advised us that we can plan for Faith's surgery from October onwards. Faith has weak chest muscle from CP, and has recovered from Chronic Lung Diseases within the first 6 months of her life on an oxygen machine, she is prone to pneumonia (memories of hospital stays still scares me). For now, no doctor can confirm the potential long-term damage, neurologically and physically, that COVID 19 can have on a CP child. We need to make sure we are making the right decision on the timing of the surgery, and hope this will reduce the risk that we might expose her to.
With all that said, John and I have decided to request January 2021 for Faith's surgery, and I have just received a response this morning confirming they will pencil her in for January, and will liaise with us for a firm date later in the year. We are in prayer, and hope by January 2021, COVID 19 can be better controlled, and we can keep her safer.
From now on we have a lot of work in front of us. We have a window of opportunity to help her body be stronger for the surgery. We will also have to work hard to combat her growth spurt during the last few months, which has made her muscles tighter and pull on her bones. Unfortunately, some of the short-term assistance that we could get her, such as Botox, faces a long waitlist due to the lockdown.
We will have to be vigilant and keep her movement going, doubling our effort to continue the fight with her spasticity.
We pray that surging numbers of COVID 19 in the world will settle, so our friends and families around the world will be safe, and we can continue our travel for Faith.
May health and peace be with you and your household.
From Jessica and John
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This page was created on 14 Aug 2019 and closed on 7 May 2020.