A mum has shared how her four-year-old daughter is overcoming the odds – despite battling brutal seizures on an HOURLY basis.
Morgan Eichelberg’s pregnancy went completely smoothly, but when she gave birth to Hanna in February 2020, she started to display a range of symptoms over the following weeks.
It became clear that she had hearing loss – soon becoming completely deaf – and the tot had her first seizure at 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 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.”
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.”
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 what would usually be normal tasks, hard.
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.”
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.”
READ MORE: Mum not having another child due to MILK CRISIS and COL says rising formula cost is ‘heartbreaking’
