Bentleys Rare POLG gene mutation
Fundraising campaign by
Louisa Pickles
-
ZAR78,855Donated So Far
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Campaign Story
Bentley was born 19 September with a rare genetic disorder POLG. As his tests state VUS, which is a varient of uncertainty, the Drs are struggling to link a syndrome to his condition. Bentley gets seizures that so far has been uncontrollable. He does regularly MRIs and EEGs that dont seem to give accurate answers. This fundraiser was created to help raise money to keep Bentleys medical Bill's up to date and for the Drs to keep giving the treatment that he needs ♡ For more details, follow the updates ♡
Organizer
- Louisa Pickles
Donors
- Patricia Howard
- Donated on Dec 27, 2020
With much love and deepest condolences from Colin, Tricia and Della Howard. Xxx
- Sarah Girling
- Donated on Dec 27, 2020
Dear Louisa & Dante, so sorry for your loss. You are in our thoughts and we are we sending you our condolences & virtual hugs. Sarah, Adam & Piers xx
Pyloric stenosis successful
Update posted by Louisa Pickles at 02:44 pmLittle B's operation went well, was in theater for about an hour and a half.
Pyloric Stenosis
Update posted by Louisa Pickles at 05:45 pmWe have been told that Bentley will be going into theater tomorrow for an operation called Pyloric Stenosis. He has been constantly vomiting and therefore vomits up all his seizure medication causing him to have 23 seizures including a desaturation as low as 18 on Tuesday. He will be going
Bentleys milestones
Update posted by Louisa Pickles at 12:35 pmSo far, bentley sadly hasnt reached any milestones. He is unable to cry or suck a bottle. He is fed through a feeding tube and is on Neocate formula after he rejected many others.
The Genetic Disorder
Update posted by Louisa Pickles at 07:12 amThe DNA polymerase gamma gene (POLG) is needed for mitochondrial DNA replication and repair. Mutations in POLG cause mitochondrial DNA depletion or deletion syndromes with myopathy, progressive external ophthalmoplegia (PEO), neuropathy, ataxia, seizures, and even liver failure and encephalopathy
The seizures
Update posted by Louisa Pickles at 07:08 amFor 2 weeks Bentley was on seizure medication for 2 weeks, when the Dr said the convulsions are not being controlled and that's when we needed to get a neurologist in. Bentley was transferred to Pretoria Unitas Netcare hospital to an infantile neurologist who attended very fast. He did the
Bentleys Birth
Update posted by Louisa Pickles at 07:04 amBentley was born 19 September 2020. An emergency C-Section happened after mommy had a stomach abruption and Bentley was not recieving enough oxygen. He was admitted straight into ICU. The Dr was extremely unsure as to what was happening as all his basic testing came back normal. A few days
Donors & Comments
- Anonymous
- Donated on Jan 03, 2021
Our Dear Lulu, a small donation which we hope will provide some small relief during this very difficult week for you both. With all our love and prayers, Rosie and Richard ♥️
- Patricia Howard
- Donated on Dec 27, 2020
With much love and deepest condolences from Colin, Tricia and Della Howard. Xxx
- Sarah Girling
- Donated on Dec 27, 2020
Dear Louisa & Dante, so sorry for your loss. You are in our thoughts and we are we sending you our condolences & virtual hugs. Sarah, Adam & Piers xx
- Katherine Dunn
- Donated on Dec 24, 2020
Thoughts and prayers are with you all Lots of love Katherine and Donal xxx
- Helen Hurst
- Donated on Dec 24, 2020
Dear Lulu, I hope this goes a little way to helping you. God bless and I’m sorry to hear that Bentley was only in this life for a short time. Sending you blesssings. Helen xx
- Emma j girling
- Donated on Dec 23, 2020
Dearest Lulu Hope this helps, please let me know if you need more God Bless Emma
- Steve Dunn
- Donated on Dec 08, 2020
Good luck and our thoughts and prayers are with you all. Love Steve and Cristina. xx
- Anonymous
- Donated on Dec 02, 2020
With our love to you all x
- Anonymous
- Donated on Dec 01, 2020
- Anonymous
- Donated on Dec 01, 2020
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Our Dear Lulu, a small donation which we hope will provide some small relief during this very difficult week for you both. With all our love and prayers, Rosie and Richard ♥️