A MUM’s dreams of her daughter learning to speak, drawing, running, were dashed to pieces within weeks of her baby’s birth.
Morgan Eichelberg’s pregnancy went completely smoothly, but just a few weeks after she gave birth to Hanna in February 2020 the tot started to display a range of concerning symptoms.
Jam PressWithin weeks of Hanna being born, her mum Morgan Eichelberg noticed concerning symptoms in her daughter despite her textbook pregnancy[/caption]
Hanna with her mum Morgan, her dad Felix and sister Lauren – the tot was diagnosed with rare Lennox Gastaut SyndromeJam Press
It means she suffers from multiple different seizures daily and has learning and developmental difficultiesJam Press
It became clear that Hanna had hearing loss – soon becoming completely deaf – and she had her first seizure at just eight weeks old.
Shortly after she turned one, Hanna was diagnosed with a type of epilepsy called Lennox Gastaut Syndrome – a severe condition that causes repeated seizures and developmental delays.
“Hearing the devastating news of this new diagnosis was heartbreaking,” 29-year-old Morgan, a nursing student from Rock City, Illinois, US, told http://NeedToKnow.co.uk.
“After researching LGS, we knew Hanna’s life expectancy would be limited.”
The condition has caused Hanna to deteriorate, losing most of her motor skills meaning she can’t roll or sit.
The little girl can rarely smile and only makes minimal sounds to communicate.
It also means she is heavily affected by two different types of seizures – the more severe grand mal seizures, which only happen when she is very sick, and her infantile spasms, which happen on an hourly basis every day.
She said: “The grand mals can range from six to 50 minutes, and completely exhaust her body.
“She has had her spasms since she was eight weeks old, and they have increased over time, despite trying numerous treatments.
“Her hourly spasms are quick and last no more than 10 seconds.
“But within those 10 seconds, everything is completely wiped, she could be crying, have a spasm, then stop crying and start smiling.
“They wipe away whatever she is doing and feeling at that moment, and start her all over again.”
Little miracles
But despite all her hardships, Hanna is still progressing – even learning how to draw, with assistance from her loving family.
Morgan said: “Hanna’s life expectancy isn’t long – I’ll praise god if she makes it to her 18th birthday.
“That being said, there’s a fire within me to push and push for treatment, or at least something to prolong Hanna’s life.
“It’s hard and so very painful to live in anticipatory grief day in and day out.
“But we live every day like it could be Hanna’s last and we try to enjoy every single moment.
“This involves not getting upset over the little things.
“It means finding joy in Hanna’s sweet smile.
“I wish people understood that life with Hanna is so hard, yet so unbelievably rewarding.
“Every milestone that Hanna makes is few and far between, but each one is its own little miracle.”
Hopes dashed
When Hanna was first born, the family dreamed of the time when she would be able to draw, run, and learn to tie shoes.
But the older she became, the more they realised their daughter would find these supposedly normal tasks impossible.
Her mum said: “I started to realise I would never hear her say ‘I love you’.
“I would never get to send her off to her first day of nursery, for about two years, that was a hard, emotional adjustment.
“The smallest triggers caused me to feel heartbroken.
“Friends having healthy babies, friends playing dolls with their little girls…I envied family and friends who had children that could eat by mouth and throw temper tantrums and that could express their little emotions.
“My little girl would never be able to do those things.
“But, as time has gone on, I’ve grown to accept Hanna for who she is and what she brings to our lives.
“I would do anything for Hanna.
“I would take her place in a heartbeat, but it’s difficult to accept a diagnosis.”
It takes a village
Hanna also has a wonderful home nurse who comes round to help.
Morgan added: “She has become a part of our family and we are eternally grateful for her.
“I currently am going to nursing school to be Hanna’s official second caregiver.
“Before Hanna I had gotten my associate’s degree as a Certified Medical Assistant and worked for a year in family practice.
“Looking back, I am so thankful for that small medical background.
“The knowledge it gave me was a huge help in being a great caregiver for her.
“And even though I may not be official yet, Hanna’s care is a lot to manage with five therapies weekly, appointments, seeing specialists, medications, and more.
“Managing all of that plus trying to be a mother is difficult.”
Part of Hanna’s care includes the family and doctors also have to keep a close eye on her bodily functions.
Morgan said: “Along with the LGS, we have to follow her kidney and liver function very closely.
“Her kidneys don’t work like they should.
“I last counted 19 specialists on Hanna’s care team along with five weekly therapies.”
Hanna is supported by mum, dad Felix, and her 11-year-old sister Lauren, 11.
Morgan added: “I’m honestly proud of my entire family.
“I’m proud of my husband for embracing his role as a medical dad and doing it with such love and determination.
“I’m proud of my older daughter for embracing Hanna for who she is and for loving her unconditionally.
“I’m proud of myself for also taking on this role as a medical mum and fighting for the best for my sweet Hanna.”
Morgan details Hanna’s journey on Instagram, where she hopes to raise awareness for her condition, as well as receive support from a whole community of people rooting for her daughter.
She added: “Once I made my Instagram public, and started my own blog I decided that I truly wanted to educate the public about rare diseases such as LGS.
“Children with LGS and other life-threatening diseases are still blessings and can teach us so much.”
What is Lennox Gastaut Syndrome?
Lennox Gastaut Syndrome is a severe form of epilepsy that affects around one or two in every 100 children with the condition.
It usually becomes apparent when a child is between three and five years of age, according to Epilepsy Action.
It can have a number of different causes including:
Genetic conditions, caused by a gene mutation
Problems with the structure of the brain or how it’s formed during pregnancy
Problems just before or during birth, like your baby doesn’t get enough oxygen during or just after their birth
Having certain infections, like meningitis, as a young baby
Brain damage following a severe head injury
Children with Lennox-Gastaut syndrome will usually have different types of seizures, including tonic seizures where their body suddenly stiffens and they fall down.
Nearly all kids with the condition also have learning difficulties and behavioural problems.
Jam PressHanna might not have long to live – but Morgan says every bit of progress she makes is a little miracle[/caption]
Jam PressHanna’s family has embraced her condition unconditionally and rallied around her to support her[/caption]