Princess Laeya's Fighting Chance
Donation protected
Help Aalaeya to see, walk, talk, and learn through initial and ongoing therapy, only available in the US.
Aalaeya (Ah-Lay-Ya) was born in 2011 as a planned home birth that didn't quite go to plan! When she was born she was short of oxygen for several minutes, however the midwives gave her the all clear.
A few months later we noticed Aalaeya wasn't holding her head up, like our 3 other daughters had at her age, then she didn't roll over, then she didn't sit up - we got worried, took her to the GP. She was referred to the community paediatrician, however whilst waiting for the appointment when Aalaeya was about 10 months she had her first episode. Aalaeya started getting sever tremors every muscle in her body uncontrollably shook, even her tongue. This lasted for hours, in fact it didn't stop until she fell asleep . We took her to the hospital, they have us an emergency appointment with the paediatrician, and tested for epilepsy. It wasn't that. Next thing we knew we were sent to Great Ormond Street.
Aalaeya had various tests, 2 lumbar punctures (which were horrific to watch), an MRI, needles sending electric pulses into her muscles to test them, blood tests and I could go on. Nothing conclusive came back apart from signal abnormality in the brain, and a heart murmur. However no disgnosis.
We had Aalaeya blessed at church, on her 1st birthday, we made a huge fuss, 200 guests came to wish her well. We didn't know what was wrong with our daughter, her future was uncertain, and we wanted to make memories.
Then a result came back which needed further investigation. Aalaeyas AFP levels were abnormally high, it indicated a condition which tied in with her Ataxic tremors- Ataxia Telangectasia (A-T). We had never heard of this so researched it, and were devastated. This disease, affected children and caused their immune system to break down, it made them more suceptible to cancers such as leukaemia. Most didn't survive childhood. We cried, we prayed and we waited. Testing for A-T took months and was only done in one lab in the UK. We prepared for the worst, and lived in hell for 6 months. Whilst sitting at my desk at work one day a call came from a professor in Birmingham "It's not A-T" he said. Again I cried this time with relief and joy.
Aalaeya was now 2, she had incredibly poor balance and would fall over and injur herself constantly. She was delayed in all areas, couldn't stand, walk, talk, feed herself. The doctors ran out of options. Aalaeya was diagnosed as partially sighted, her optic nerve severely under-developed. We didn't know what or how much she could see.
Dr's thought Aalaeya had a genetic disorder that affected her brain, however initial tests came back negative. She was entered in the DDD study, which is a pioneering way of looking at all genes at once to find any abnormalities, but results could take years.
We couldn't do anything about her genes but we could try and help the symptoms caused by whatever was occurring in her brain. We used all our savings on therapy, extra physio, and speech therapy. We took Aalaeya all over the countries for different approaches , with good results. We fought for Aalaeya to get conductive education through her special needs statement, a move which saw Aalaeya start to cruise, speak in 2 word sentences, and learn some colours.
All of these things were treating the result of Aalaeyas genetic and neurological abnormality. We started to look into how we could treat the cause. The brain is always developing, could we target Aalaeyas brain and help it heal?
We looked at people who recovered from brain injury such as stroke and for the first time thought, it's possible. Then we came across the Family Hope Centre. They have been helping children with learning and physical disabilities reach their full potential for years. By identifying the part of the brain that is disordered, and targeting specific treatments to reorder or heal the brain.
We were amazed at the personal stories on the site, but also wanted to research outside of that. I went on some UK parenting sites to see if anyone had heard of them or used them and spoke to several parents whose children were now walking and talking through their methods. One of the most beneficial aspects of their programme is that they teach parents exactly how to identify the issues, and action the programme themselves.
Family Hope Centre is in the USA, my husband is full time carer for Aalaeya and stay at home dad for our other girls, and so I am the sole breadwinner for the family. We therefore cannot afford the therapy and to get us all there.
We feel that this therapy will help Aalaeya to walk, talk, see, stand, learn, develop and play. The brain controls everything, and targetting this area is the only way to help reverse the damage she has suffered. Aalaeya will also need ongoing 6 monthly reviews to amend her therapy as she heals, and also needs adaptions to our home as she is injuring herself when she falls which makes her scared to try to stand etc by herself.
So if you can please help our family, we love Aalaeya very, very much, and hate to see her like this, trapped in a body that doesn't work- she is a fighter, but she needs support to make it through.
We do not want Aalaeya to be a burden on the state, we want her to be independent and contribute to society and the world - please help us to this.
Aalaeya (Ah-Lay-Ya) was born in 2011 as a planned home birth that didn't quite go to plan! When she was born she was short of oxygen for several minutes, however the midwives gave her the all clear.
A few months later we noticed Aalaeya wasn't holding her head up, like our 3 other daughters had at her age, then she didn't roll over, then she didn't sit up - we got worried, took her to the GP. She was referred to the community paediatrician, however whilst waiting for the appointment when Aalaeya was about 10 months she had her first episode. Aalaeya started getting sever tremors every muscle in her body uncontrollably shook, even her tongue. This lasted for hours, in fact it didn't stop until she fell asleep . We took her to the hospital, they have us an emergency appointment with the paediatrician, and tested for epilepsy. It wasn't that. Next thing we knew we were sent to Great Ormond Street.
Aalaeya had various tests, 2 lumbar punctures (which were horrific to watch), an MRI, needles sending electric pulses into her muscles to test them, blood tests and I could go on. Nothing conclusive came back apart from signal abnormality in the brain, and a heart murmur. However no disgnosis.
We had Aalaeya blessed at church, on her 1st birthday, we made a huge fuss, 200 guests came to wish her well. We didn't know what was wrong with our daughter, her future was uncertain, and we wanted to make memories.
Then a result came back which needed further investigation. Aalaeyas AFP levels were abnormally high, it indicated a condition which tied in with her Ataxic tremors- Ataxia Telangectasia (A-T). We had never heard of this so researched it, and were devastated. This disease, affected children and caused their immune system to break down, it made them more suceptible to cancers such as leukaemia. Most didn't survive childhood. We cried, we prayed and we waited. Testing for A-T took months and was only done in one lab in the UK. We prepared for the worst, and lived in hell for 6 months. Whilst sitting at my desk at work one day a call came from a professor in Birmingham "It's not A-T" he said. Again I cried this time with relief and joy.
Aalaeya was now 2, she had incredibly poor balance and would fall over and injur herself constantly. She was delayed in all areas, couldn't stand, walk, talk, feed herself. The doctors ran out of options. Aalaeya was diagnosed as partially sighted, her optic nerve severely under-developed. We didn't know what or how much she could see.
Dr's thought Aalaeya had a genetic disorder that affected her brain, however initial tests came back negative. She was entered in the DDD study, which is a pioneering way of looking at all genes at once to find any abnormalities, but results could take years.
We couldn't do anything about her genes but we could try and help the symptoms caused by whatever was occurring in her brain. We used all our savings on therapy, extra physio, and speech therapy. We took Aalaeya all over the countries for different approaches , with good results. We fought for Aalaeya to get conductive education through her special needs statement, a move which saw Aalaeya start to cruise, speak in 2 word sentences, and learn some colours.
All of these things were treating the result of Aalaeyas genetic and neurological abnormality. We started to look into how we could treat the cause. The brain is always developing, could we target Aalaeyas brain and help it heal?
We looked at people who recovered from brain injury such as stroke and for the first time thought, it's possible. Then we came across the Family Hope Centre. They have been helping children with learning and physical disabilities reach their full potential for years. By identifying the part of the brain that is disordered, and targeting specific treatments to reorder or heal the brain.
We were amazed at the personal stories on the site, but also wanted to research outside of that. I went on some UK parenting sites to see if anyone had heard of them or used them and spoke to several parents whose children were now walking and talking through their methods. One of the most beneficial aspects of their programme is that they teach parents exactly how to identify the issues, and action the programme themselves.
Family Hope Centre is in the USA, my husband is full time carer for Aalaeya and stay at home dad for our other girls, and so I am the sole breadwinner for the family. We therefore cannot afford the therapy and to get us all there.
We feel that this therapy will help Aalaeya to walk, talk, see, stand, learn, develop and play. The brain controls everything, and targetting this area is the only way to help reverse the damage she has suffered. Aalaeya will also need ongoing 6 monthly reviews to amend her therapy as she heals, and also needs adaptions to our home as she is injuring herself when she falls which makes her scared to try to stand etc by herself.
So if you can please help our family, we love Aalaeya very, very much, and hate to see her like this, trapped in a body that doesn't work- she is a fighter, but she needs support to make it through.
We do not want Aalaeya to be a burden on the state, we want her to be independent and contribute to society and the world - please help us to this.
Organizer
Cons McYung
Organizer
