October 20, 2018

Insight from a diaspora mum coping with son’s rare neuromuscular condition, appeals for support

By Thuothuo Anthony | Boston, MA

Lydia Mugure is a new mother with an extraordinary gift of hope and resilience. Her handicapped son Nathaniel Kariuki who was born at MultiCare Tacoma General Hospital in Washington just turned one year on Nov. 13, 2017.

Kariuki looked perfectly fine when they left the hospital a day after a normal delivery. Lydia had just delivered a full-term, healthy looking and handsome little man, but things would change a few months later when he was diagnosed with Spinal Muscular Atrophy (SMA), a fatal neuromuscular condition affecting approximately 1 in 11,000 babies.

”It was a really easy pregnancy, it never rang any bells with any difficulties, nothing was out of the ordinary” Lydia told Jamhuri News on phone from Washington.

Nathaniel was doing well at home in spite of a small rattling noise while breathing which concerned his parents. After numerous visits to the doctor, there was no clear diagnosis and the doctors were treating it as bronchiolitis- a common lung infection of the respiratory tract caused by an infection that swells the tiny airways that lead to the lungs.

At four months, the situation worsened and Lydia would even pull over her car to sanction Nathaniel so he could breathe comfortably.

It was a double challenge when Lydia and Kariuki’s dad separated and she was left with the uncertain circumstances of her son and all the hurdles that come with being a single parent.

Lydia suspected that Nathaniel Kariuki’s situation was more than bronchiolitis when the noise in his breathing persisted and he developed difficulties with both breast and bottle-feeding resulting in excessive weight loss.

Furthering Lydia’s concerns, Kariuki’s chest had a triangular shape, and when she mentioned it to the doctors they dismissed it as normal, although her instincts suggested otherwise. Nathaniel then started losing his legs muscle power and later his hands.

”Initially, he was able to move all the limbs but then I noticed his legs were beginning to lose power. When you’re changing the baby’s diaper, you know the baby is usually playing with their legs lifting them up and….this was not the case with my son; and his hands too, he could move them a little bit but he couldn’t lift them,” said Lydia.

As Lydia struggled with balancing doctor’s appointments and work schedules, she decided to walk into the doctor’s office one day and request that they comprehensively examine her son, arguing that severe bronchiolitis only lasts for about three weeks.

”There were so many unconnected dots, and so one morning I woke up and went to the doctor although I didn’t have an appointment; I just walked in and I told the doctor that I’m not leaving today until you give me a definitive answer” says Lydia.

They were referred to Mary Bridge Children’s hospital where meticulous tests were done. It is there that the neurologist diagnosed baby Kariuki with Spinal Muscular Atrophy (SMA) Type 1, a rare genetically inherited neuromuscular condition that affects a particular set of nerve cells.

”The neurologist came in and dropped the bomb and told me my son has Spinal Muscular Atrophy, and I was like, what is that?…I’ve been a nurse for eleven years and I’ve never heard of anything like that” she said.

The doctors told her that Kariuki would most likely not live beyond 12-18 months.

” I held my baby and started crying and thinking..oh my God, this cannot be happening to me”

While SMA is a lethal condition, Kariuki’s diagnosis came at a time when there’s a new medication that has just been approved by the U.S. Food and Drug Administration to treat the disease. The medication- Spinraza (nusinersen) is the first ever to treat the illness, and at the time of Nathaniel’s diagnosis, it was only available at Settle Children’s Hospital.

Lydia and her son were admitted to Seattle Children’s hospital in May 2017, staying in the ICU for three weeks where baby Kariuki was put on the life-saving treatment cycle with Spinraza.

The medication cost is quite exorbitant, costing $750,000 for the first four loading doses administered within the first two months of treatment. SMA patients require lifetime treatment with Spinraza, costing an extra $125,000 every four months.

”It takes me back to being a very thankful mother because of being in this country where we can get a diagnosis, and have a job that has been able to facilitate my son getting life-changing therapy through insurance” Lydia says.

Baby Kariuki feeds through a G-tube and uses a BIPAP ventilator assisting in his breathing.

He is currently on dose five of Spinraza, and he’s now able to lift his hands off the gravity, his voice is louder and his legs and neck are able to move some more since starting the life-changing therapy.

Lydia has no immediate family in the USA and has been relying on support from her family in Kenya who have been aiding with taking care of her bills. She speaks highly of the support she has received from them since the diagnosis of her son, but she says the family has now hit a snag financially and she’s struggling in finding a way to even meet her basic needs. Her few friends have also been supportive in providing baby supplies and moral support which she says have been of great help.

”I had to flip around my work schedule from fulltime scale to a bare minimum of two days a week so I can manage the appointments and take care of Kariuki at home.

My family has been very supportive, my sisters came from Kenya to help me but they had to go back, my mum has been coming from Kenya, she’s currently here but she’ll soon be going back ”she says.

Lydia manages up to four appointments a day with various specialists assessing baby Kariuki’s condition.

Lydia has been a nurse for eleven years, having worked at Nairobi Hospital and Aga Khan Hospitals’ Intensive Care Unit as well as MultiCare Good Samaritan Hospital in Washington. She says her experience in the field has given her resilience and strength to take care of Kariuki.

”It’s a very large tree of care, and being the trunk that coordinates all those branches has not been easy, but I thank God for giving me the knowledge in nursing and the strength to get through all the challenges. God gave me this child because He knew I can take care of him”. Lydia says.

With Nathaniel slowly regaining the milestones that he lost to SMA, Lydia can only be grateful and hopeful.

”One of the first recipients of this new medication is four years and he’s now walking, I’m hopeful that Kariuki will get there too, there’s hope at the end of the tunnel”. She told Jamhuri News reporter.

With SMA being a long-term illness and Lydia being a single mother, Kariuki’s health and wellbeing all fall on Lydia, and she is reaching out to people of goodwill for support. She needs help in meeting her basic needs since she does not find time to work enough hours to sustain her needs and those of her son.

Baby Kariuki needs a wheelchair accessible van which Lydia says will make attending appointments much easier.

”A wheelchair accessible van will make attending our favorite activity, Aquatherapy so much easier. We have to haul all this medical equipment with us for each appointment, that is 1- 2- 3 appointments daily. Your help, through your contribution, will mean we get to therapy sessions on time.” Says Lydia in a statement.

Lydia’s advice to parents is to look out for the symptoms of SMA early, adding that it’s not a doctor’s diagnosis but parents’ since it’s not that common.

Babies with SMA can have difficulty crawling, walking, or even breathing. Older kids can have trouble getting around and mastering simple tasks of everyday life, like brushing their teeth, but the IQ in kids with SMA is never affected; perhaps a God’s way of making up for the lost muscle power.

Lydia has created a Gofundme account to help with fundraising towards the cause.

Names: Lydia Mugure Waigi
Bank: Wells Fargo
Routing number: 101089292
Account number: 3136202169

Cash App:$LydiaWaigi {505 803-9264}

God Bless you all much much.

Please help baby Kariuki achieve his goal by donating and sharing this. 

Gofundme Help Link: https://www.gofundme.com/mdea5-nathaniels-ride



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