Urgent whip - round!
28.01.2015 The Bioethics Commission agreed to start experimental therapy using stem cells from Wharton’s jelly. When Amelia’s parents heard it, they didn’t believe it – it’s a chance for Amelia to walk. They made an appointment as soon as one was available – the 18.03. That day, in Lublin, the first from five portions of cells was applied to Amelia. Amelia’s mum explains that the therapy are only simple injections. There are 10 mln stem cells in one injection. The application takes place once every 6 weeks. Before the first day of the therapy we didn’t really know how Amelia’s body react to the stem cells. It is an experimental method and she is the first person in Poland with spina bifida who participates in this therapy. There were other cases, but not with spina bifida: a blind boy who regained his sight, a girl from Romania with cerebral palsy who started to use her hands – she wasn’t able to do that before. The therapy can stimulate the nerves and the muscles, improve the working of the legs, the bladder and the brain. It could affect everything within Amelia’s body that currently doesn’t work properly. Amelia needs our help to continue the therapy. It’s a huge chance for her. Her parents hope the doctors will be able to stimulate movement in Amelia’s legs. There is one significant obstacle: money. That’s the only thing which can stand in Amelia’s way. That’s why help of good people is very important – we cannot lose this chance.
Amelia was born 23.10.2012 at 12:43 weighing 3100 grms. I saw her just for a moment. I gave her a kiss on her forehead and she was taken away from me to fight for her life. The next day, she was in surgery. I only had 10 minutes to say goodbye to her – not forever, just during the time of the surgery. I couldn’t even think about my daughter giving up.
„Don’t do anything – she’s going to die.” – Those words I’ve heard as a future mum, being pregnant, carrying my little miracle. Every fortnight, this coming Friday is supposed to be my next regular visit. It is the 32nd week of my pregnancy, not much time left now. At one point of the visit the doctor was silent for a while. I thought that something was wrong. After a moment I heard, that the left ventricle within the brain was bigger than it should be. Calmly and without emotion the doctor added that the spine was complete. I don’t remember my way home. I was crying, calling my husband and my mum. After that visit I started to search for information whilst also asking others doctors – I still thought it was a mistake.
The ultrasound had showed us exactly what was wrong with our daughter. It turned out Amelia didn't just have hydrocephalus but sha had got spina bifida and congenital talipes equinovarus as well. SHOCK! I was told the spine was not damaged. Over the following weeks we were eagerly awaiting Amelia’s birth. It was a hard time. The Doctors said the activity of legs appeared to be less and less, but I was able to feel that she was still moving. It filled me with hope.
The day after her birth, Amelia had her first surgery – the reconstruction of the hernia and the insertion of the ventriculo-peritoneal valve. I had only had 10 minutes to say goodbye to her – not forever, just for during the time of the surgery. My husband was watching over her all the time, and I was waiting for a call. The surgery was a success. After 5 days I could finally take care of Amelia. I couldn’t wait for the first feeding, changing her diaper and bathe her. I was staring at her little legs for hours, hoping to see movement. They were so delicate, but it made me stronger and ... happy.
I remember the joy when we left the hospital. Our joy was immediately replaced by anxiousness, how do we cope as new Parents? But there was no time for crying. We must act! We made the appointments in all the possible clinics – that was our first step. At the beginning – we focused on the feet. We were “straightening” them for 7 weeks. Every week, the bandages were changed, always accompanied by Amelia crying and screaming. After the bandages – Denis Brown boots with splits. Amelia had to wear them for 3 months, day and night. Right now we use three – dimensional manual therapy.
Amelia’s legs are currently immobile. She is not able to move them. Will they wake up? The Doctors have differing opinions, but that still gives us hope. So far, we don’t know, how far up the spine the damage of the disease is located. The lower, the bigger chance she has to walk.
From the beginning we have learnt that the doctors don’t always know everything. You must believe in miracles. When Amelia was 2,5 months old we were told she needed to attend a special school. Wrong! Mentally she develops in the right way. The same could happen with her legs. Unlocking the spinal cord can act like a kiss of the prince, which wake them up. At the right time we hope the surgery will be successful. The rehabilitation also cannot be neglected. It would mean we gave up on Amelia and condemned her to a wheelchair. If we don’t believe in her, then who does? That’s why we ask for everybody’s help to support our fight of this disease. There is only one barrier – money. Please, help us defeat it over the future years our daughters life.
For the child, its mother can go through hell to ensure her child will live heaven on earth. This sentence is particularly remembered by me. My dream as a mother is that one day Amelia comes to me and says: “Mummy, thank you for fighting for me”. With this, I wouldn’t even need words. The hug of a daughter, who is able to stand by herself, would simply be enough. Please, help us to make this dream come true.